Parenting

19

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My son turned 19 today. I can’t believe 19 years have passed since I became a mother for the first time. My Thomas. The one who made me grow up and become an advocate. I wasn’t looking to be anything other than a mother in those days.  I certainly wasn’t looking to be the mother of a special needs child. That was not in the “plan”. As if it’s in anybody’s plan when you start your family . I once read on a special needs parenting message board, “when you agree to become a mother you essentially agree to become the mother of a special needs child…” Meaning you usually don’t know that that child will have issues, or something to that effect, the exact words escape me. I’m not sure I agree with that statement but I’ve never forgotten it.

Being Thomas’ mom changed me. To this day I’m still being changed and challenged and growing and grieving. I don’t think the grieving ever stops when your child is special needs. You never stop wondering the what ifs. We have the added bonus of having to trust virtual strangers to care for our child since he cannot live at home. We have been blessed with the residential facility that Thomas lives at. These “strangers” have earned our respect and many times when we are fortunate enough to see the staff that cares for our son, we are more than happy to be in their presence. More than happy to inquire about their well being. I’m happy to be on a first name basis with the social workers and charge nurse. I’m very happy to be on the receiving end of a hug or kiss hello from them. It’s been 3 years this June that Thomas entered the residential facility and I’m extremely happy to say for the most part it’s been an uneventful 3 years in that there hasn’t been any emergencies or drama or situations to make us unhappy.

This 19th birthday also marks three years that I’ve been treated for depression and anxiety. I first sought help before Thomas’ 16th birthday.  I’m thrilled to be feeling as well as I do. It’s been a long road and now that I am in the light I don’t mind talking about the dark times. I don’t want to dwell on those times but if my writing about my dark time can help someone else and know they’re not alone it’s worth it. 3 years ago I never thought I’d be where I am today.

Blessings

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https://youtube.com/watch?v=1CSVqHcdhXQframeborder%3D0allowfullscreen

I have this song running through my head this morning, Blessings by Laura Story. Yesterday my husband and I were talking to a neighbor who also has a special needs daughter. Many of you know about our Thomas who is also special needs. We’ve been through many, many trials with Thomas. And everytime I hear this song I think of him. What if our greatest trial is God’s blessing in disguise?

Anyway, when we were speaking with our neighbor she mentioned that she often wonders what her daughter would have been like had things been different. My husband replied that he often thinks the same thing about Thomas. I do think that also about Thomas. The big “what if?”  What if he’d been born “normal”?. What if? It almost makes you loathe the word, “if”. That word can hold so much. Thomas is one of the greatest achings of my life. It still pains me that he cannot live at home. I know my husband feels the same. I love Thomas for who he is now, not what he could have been. Thomas being the way he is changed me as a mother. And if I were to be able to change him to a “normal” person, would I then have to change myself to how I was before he was in my life?

I honestly don’t dwell on the what ifs because it is pointless. I tend to focus on the present and future which can hold enough worry all by themselves.  But this song speaks so perfectly to my heart. Especially when she sings, “This is not our home…”  No, this is not our home. I often wonder if when I do meet our Lord will I ask Him questions about my earthly life. Thomas being in the forefront of those queries. Why were we chosen to be his parents? Why did God make things so challenging? Why the heartache? Or will I even care at that point? What I do believe is that when Thomas meets the Lord and joins us, I believe he will tell us himself. It will be glorious to hear my son talk clearly and coherently. I was given a glimpse of this in a dream I had a couple of years ago. Thomas was just a typical teen and him, Alyssa and I were just sitting in our front sun porch talking to one another. I have no idea what we were talking about I just remember Thomas being “normal”. I know when we’re all in heaven together we’ll all talk again. God gave me a preview.

Life~I’ve been happy

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LIfe’s been good.  Today is Thomas’ prom and we’re going, the whole family plus Alyssa’s boyfriend. We will have a good time I know. Thomas is really looking forward to it and on the phone happily told me all about the new clothes he recently shopped for along with new shoes.  He will look so handsome! We’re bringing him home after the prom and on Saturday we will celebrate my parent’s 50th wedding anniversary with a party. My sister did about all of the work related to the party. I can’t thank her enough.

Alyssa and I have toured 2 colleges in Manhattan.  She’s a junior in high school set to graduate next year. I can’t believe we’re looking at colleges for crying out loud, it seems like just yesterday she was in grade school and Samantha was just born.

So as my title says I’ve been happy. I love feeling this way. It’s so “normal” I’m not detached or depressed. I don’t feel like I have to “work” at being myself. It’s all good. I’m still seeing my therapist but it’s different now. I’m not searching for anything, mostly we just talk about life, or rather I talk about my life.  The “usual” circumstances that happen when you have children of various ages. It’s a good talk.

I really enjoy church. I’m really trying lately to understand “is God enough?” I feel like my eyes have been opened recently in realizing that I have other things and people in front of God and this is not right. I need for Him to be first. I want for Him to be first.  I’ve also stopped comparing my family to others. I didn’t realize I was doing this until I stopped and had a realization that God has given me the people in my family. He hand chose them and me to be together in this lifetime. I haven’t been discouraged in my walk with the Lord, rather He’s made me pause and think and appreciate all that I’ve taken for granted. My family, my husband and even God. I hope to have a more grateful approach to life.

Christmas

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My son is home for Christmas. Alyssa and I picked him up this morning and made great time coming home. In addition to the many toys he was given for Christmas from his school, Thomas also has new sneakers he managed to finagle his social worker into buying *right* after Tommy bought him brand new sneakers Thanksgiving weekend. He is charming. I’m so glad Thomas is home. Especially for Christmas. I can’t imagine him not being here. We’ve already set up the batteries in one of the remote controlled cars he received from school. I started thinking about the time we thought Thomas was going to spend Christmas in the psych hospital. That happened about 5 years ago I think.

Thomas had been very aggressive towards me and I finally couldn’t take it anymore and we had him hospitalized I think the beginning of December/end of November. They did some med changes and his behavior stabilized in the hospital like it always did. I was so fortunate to be singing in the choir that year and we were singing for the Live Nativity. Singing in the choir was a life saver for me. My choir family was praying for us.

We made the 2 hour car ride to visit Thomas and attend meetings with the social workers and psychiatrists. I blamed myself for him being hospitalized at this time so close to Christmas. I was thinking I should have initiated it sooner than I did then he would have been discharged earlier. What’s done was done though. The beginning of December melted into the middle of December, the Live Nativity came and went and we were wondering if Thomas was coming home before Christmas. Finally, about 5 days before Christmas we got the call from the social worker that Thomas was indeed spending Christmas in the psych hospital. We were devastated. How was this going to happen?? How were we to spend Christmas morning without one of our children opening gifts? As we were planning and talking about how we were going to make Christmas “happen”, another social worker called 3 days before Christmas to tell us the insurance company decided Thomas should be discharged. I couldn’t believe it. Simply could not. Tommy was beside himself with joy. He drove up as soon as he could to get him. We did have Christmas together and all was “normal”. Thank the Lord.

I’m grateful those days are behind us and we don’t have to worry about whether we’ll all be together for Christmas. I’m grateful for Thomas’ school and that Thomas is able to come home as often as he does, for as long as he does. His school has truly been a blessing.

The holidays are here!

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Well officially Thanksgiving in about 4 more days. I’m not sure how I feel about the upcoming holiday season. Am I dreading the actual Christmas shopping? I don’t know yet as I haven’t even started, no actually I have started, the gifts haven’t arrived yet via our wonderful postal system I almost forgot about them. One gift I did buy my husband I do actually have here in the house…hidden, haha!

Every year we jump through hoops trying to figure out what to buy our son Thomas. He loves opening gifts. However he isn’t the easiest person to buy gifts for. He’s not one to actually play with any toys, even when he was younger he didn’t really play with toys. Now that he’s 18 it’s more difficult since he isn’t a typical 18 year old young man. I also have family calling me for ideas of what to buy him and they usually are told “I don’t know” in response. Hopefully with Thomas home for Thanksgiving we can pry something out of him or maybe we’ll hit the jackpot and find out multiple “things” he’d like.

We put our tree up the day after thanksgiving. A Thomas tradition. He loves to watch me put the tree up and help. He is a great helper. He’ll carry boxes down from the attic and hang ornaments on the tree. But he won’t rest until all the decorations are up and/or out and in their respective places. I used to dread putting up the tree because Thomas will fixate on it, no one would rest until the darn tree was up. What? You want a “break”?? I don’t think so! But he’s mellowed a bit; either that or our patience has increased. It’s probably a combination of both. These days I don’t dread it, I actually look forward to putting up the tree. It wouldn’t be the same if Thomas wasn’t helping me.

I’ll never forget the one Christmas right after I had a miscarriage. I didn’t want to celebrate anything never mind put up the dang tree. Thomas and I brought the tree down from the attic and I started stringing the lights. I tested every strand of lights before putting them on the tree, then…Of course half the lights wouldn’t work once they were actually on the stupid tree and I literally had a half lit tree. It was horrible. I took all the lights off and threw them away and declared that unless we went out and bought a pre lit tree I wasn’t putting up a tree at all. Fast forward to all of us in Sears debating which pre lit tree was best for us. My husband is the best.

So this year we’ll buy a “real” tree and I’ll string the lights and Thomas will direct and supervise as usual. I’m looking forward to it.

The next step.

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With Thomas turning 18 this year, Tommy and I are going through the process of obtaining legal guardianship of him. This freaked me out. Not that I am to be my son’s legal guardian past the age of legal adulthood, just that we have to do this period. I had a difficult time filling out the large packet of papers the social worker from school sent us and I held back tears when I had to call the Surrogate court here where we live for further information. I still can’t get over that my first born is 18 years old. Freaks me out man. Every time I think about the next steps we have to take I get choked up and remember Thomas as a baby and I feel like I want to go back. Back to when he was so small and everything was alright. We had yet to begin our journey filled with frustration and doctors and specialists.

I don’t do this with my other kids. I mean Alyssa recently got her drivers permit and as much as that is such a huge milestone and we are so proud of her, it doesn’t freak me out. I’m excited for her to learn to drive (yes it does make me nervous as any parent would be). Daniella my “baby” before Samantha, will be attending high school next year, nope not freaked out.

Is it because Thomas is my first? Is it that he is special needs and this is once again a decision and action we *shouldn’t* have to be doing? One more thing on the list that we have to decide for him? Rhetorical questions mind you I don’t want or expect answers. I remember how simple things were in those few short months before the shit hit the fan and we were set off on a quest of “Tell us what’s wrong and how do we fix it?” For the first time ever I wanted to go back in time. I know I couldn’t change anything that is wrong with Thomas, but I could appreciate more the simplicity of that time in our life.

As of right now we are in a holding pattern. There are papers still to be signed and notarized, another appointment with the guide from Surrogate court to help us further and then the actual filing and appearing before a judge. I’m ok with the holding pattern it’s giving me more time to digest this all and it gives my brain a much needed break.

Waiting and the panic.

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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.

After Breakfast

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We took Thomas out for breakfast this morning. We hadn’t seen him since his 18th birthday earlier this month. It was so awesome to see him and spend a little time together. What’s even more awesome is how he’s adjusted to living away from us. Thomas honestly looks happy. Happy to be there with people who have more patience and structure than we’ll ever have. It stings though. Stings that we aren’t able to provide what he needs. I used to joke and say one day I would be an old lady living with Thomas…and 6 cats. These days I don’t joke like that anymore because my son will be living away from me. I’ll probably still have the 6 cats though.

I never thought I’d see my son so independent of us. I’m happy for him. He still needs us as his family but he doesn’t need us for his day to day living. The staff at his school now fills that need. I’m ok with that too. It occurred to me while driving home that there were so many times during Thomas’ childhood that I couldn’t wait for him to be older, mainly so we could obtain a proper diagnosis and treatment. We/I was jerked around so badly by so many professionals it made for Thomas’ childhood to be very trying to put it lightly. I’m stunned at how fast the past 18 years have gone by. Stunned. Yet like most mothers I can recall certain memories as if they were literally yesterday. I don’t want to go back in time, once a go ’round was quite enough for me thanks. I remember so many people telling me to enjoy my kids when they were much younger and me scoffing at them. What the hell did they know about my life? I did enjoy them the best I was able to. As a parent of older teens I see how fast time flies but I won’t tell other parents to “enjoy them while they’re little”. It’s not all fun and games, in my opinion anyway.

With my older kids I’ve enjoyed and are still enjoying every stage. Some more than others. These teen years can give anyone a run for their money. Then I have Samantha who’s almost 8 and she gives me a totally different perspective. I have the opportunity to do some things differently but not like night and day parenting. My core parenting style has not changed.

But getting back to Thomas and how things are so very different that I ever imagined they would be. I always saw myself as being his care giver. At least until he entered a group home and I never had an imagined time that would be. It was always “somewhere” in the future but don’t ask me when. I never imagined he would acclimate to this school like he has. There are no tears when we say good bye, no long torturous, please don’t leave goodbyes. There’s like today, “Thomas would you like to hang out a bit after breakfast?” The answer I received? “No…bye!” He had things to do, he spent time with us and breakfast was over. And that’s ok.

Birthdays

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thomas and me birthday

My Thomas celebrated his 18th birthday this past week. It kind of blew me away that my first baby is now 18 years old. 18 years. It truly seems like yesterday I gave birth. I guess it will always seem that way no matter how old my children get. But 18…man! That’s a milestone. And what an 18 years it has been. How different things would have been if Thomas were an average “typical” child. But that’s not how God wanted it, planned it. It’s taken me a long time to accept that fact. That no matter what I did or didn’t do during my pregnancy and what the midwife did or didn’t do during Thomas’ delivery, The Father was/is in charge and was overseeing everything so that His plan was the one that played out.

It’s hard not to imagine what life could have been like had Thomas not been born the way he was. I like to tell myself there are no guarantees that he would have been a walk in the park. There’s no way of knowing if drugs would have been an issue. Would he have been extremely rebellious? Cutting school? I don’t know. I had a dream not to long ago that Thomas was completely typical. We were sitting together with Alyssa and talking. I don’t remember what we talked about but it was amazing and took me all day to get over that dream. My husband has had a similar dream as well. Was that a gift from The Lord to show us what to expect when we are no longer a part of this world? That there is a part of Thomas He has yet to reveal to us?

18 years old. 18 years of loving this child, fighting for him, changing who I am at my very core, my soul. Being who Thomas is changed me for who I am. I know that was part of The Lord’s plan as well. Amazing isn’t it? The domino effect.

We had an awesome family celebration for Thomas at a local restaurant by his school. Practically the whole staff came out to sing him Happy Birthday. Thomas was overwhelmed and almost hid behind Tommy. I stared at this child of mine. He’s still and always will be my “child” but now he’s a young man. The Lord will continue to work in us and He will continue to give us “gifts” that will glorify Him.

Identity

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It’s here, summer vacation; the kids are off from school. Part of me really enjoys the lack of a schedule, not getting up early and encouraging certain children to get ready for school on time. There’s the other part of me that misses the routine. That predictable routine. The certain number of almost guaranteed kid free hours. I will admit though I do get bored when everyone is in school, I’m currently searching for a part time job (with no success) to get me out of this house when everyone is in school. I will also admit I’m not thrilled with my current station of stay at home mom. Honestly at this point in time it is not something I would recommend anyone to do. Stay home that is. The loss of identity is overwhelming. I think that is one of my issues right now. I know I’m a wife, a mom of 4 and a Christian; in no particular order. Those are the big 3 identities I can think of right now and all put together they just don’t seem “enough”. As I’ve written before I envy those moms who are at home like me who seem to have it all together.

With Thomas not living here my identity did a major shift. I’m still his mother but I’m also not “Thomas’ mother” the way I was when he lived home. When he entered residential school I gave him to them with a heavy heart. I still mourn that loss of identity. It was like the rug was taken from under me. I wouldn’t change our decision of residential school, it was absolutely the best for Thomas and our family. And two years later it still remains the best decision.

I want a magic ball, the one where you can look into the future and see what path God has put us on and how it all plays out. Which leads to the identity of being a Christian. I firmly believe He makes all things work together for our good. But where’s the script? I know I’m being silly in wanting these things but I know I can’t be alone in wanting to know am I on the road He wants me on? Have I strayed from His path and not known it? I want to please the Lord but have insecurities where there should be none. His grace is sufficient and there should be no “buts”. His way is perfect, I just need to remind myself of that. And if I have strayed He will find a way to lead me back on track. That’s where faith comes in. Faith that God will always be with us and believing and knowing with all your heart that His way is the best way.