Graduation Today!

My Alyssa is graduating high school today. Today. She’s thisclose to turning 18 years old. I don’t wonder where the time went I was there I know how fast it all flew by. It wasn’t always flying by so fast there were days of excruciating slowness but I don’t remember them in detail so much. Much like labor pains those memories fade.

Alyssa is much like an oldest child rather than 2nd born. She was our first girl and our first typical child. I remember her as an infant (such a pretty baby even as a newborn), then toddler. In Pre-K she was the pretty little girl with long curls who clung to her mother’s leg and cried and cried. Grammar school graduation was sweet, Junior high grad was even sweeter. High school years that went so fast I stand in amazement at the woman she’s become in the past 4 years.

I feel incredibly blessed this morning. Blessed that my God has given me the privilege to raise this baby He gifted me with. I sit here holding back proud tears and remember all the times she’s made me proud, all the times she gave me the honor of being her mother. Even the times she made me want to rip my hair out.  In gifting her to me, God gave me the opportunity to parent a very typical, very beautiful, very unique child.

While raising Thomas I often referred to the poem “Welcome to Holland” by Emily Pearl Kingsly:  (http://www.our-kids.org/archives/Holland.html). There were too many times to mention that I mourned the fact that I didn’t sign up to be a special needs mom. That no, I did NOT want to be in Holland. Alyssa gave me the opportunity to visit “Italy”; the typical world, the world I thought I signed up for when I first became a mother. And for that I can never thank her enough. I don’t even know if she’d understand why I would be thanking her.

So I wish my girl all the best this world has to offer. She loves God and she loves me. What more could I ask for?

Church and a Bible Study

I haven’t been to church in about 4 weeks. And I won’t be able to attend my church this Sunday due to a family obligation. I miss my church. I miss hearing the preaching of the Gospel. It’s funny because years ago I never gave it a second thought that I didn’t go to church. I used to look at people sideways who made church a priority in their lives. Now I am one of “those” people.

I’ve been enjoying the small group I’m co-leading. Although I have to admit the way the bible study book we’ve been using  “Unlocking the Treasure: A Bible Study for Moms Entrusted With Special Needs Children” by Bev Rooseboom, sometimes brings me back to a time in my life with Thomas that wasn’t all that rosy. When I was looked at like there was something wrong with me and not him. Not that I wanted anything wrong with Thomas I just wanted someone to see what I saw and get him and us the help we so desperately needed.  The book also makes me realize just how loved I am by God and how awesome that love is.

The women in the group have truly blessed me with their presence and experiences. We have one woman who attends accompanied by her neighbor. The neighbor is an active member of my church. She doesn’t have a special needs child but her perspective of the Lord and surrendering to Him and trusting Him is something that I thoroughly enjoy.  We are blessed to have her attend the study even though she doesn’t have experience with special needs children, she has valuable experience walking with the Lord and we’re fortunate that she loves to share that part of her life with us and she does so with such joy that it’s infectious. Everyone should have a “Jan” in their life or at least in their bible study group.

Missing church makes me realize how grounded I feel when I’m there. How I’m reminded of what my Savior has done for me and every sinner in the world. How good our God is, how perfect and just He is. How He is a part of every single moment in our lives. And there isn’t anything that happens, “good” or “bad” without His finger prints all over it. I remember when I was going though a bad time depression wise and a woman I consider my Mentor put her hand on my shoulder and said she sees God’s fingerprints all over me. I can’t tell you the comfort that statement gave me.  I wasn’t in control at that time but God was. He was there every step of the way even when I convinced myself he wasn’t. God is so good.

 

 

 

Summer, bathing suits and yearbooks

Yep, it’s that time again…bathing suit season ~~shudder~~. I decided to hit TJ Maxx for their selection and low prices. And believe it or not their dressing rooms were not set up for failure like most major department stores. Last year I went to Macy’s and the lighting in their dressing rooms seemed to emphasize every wrinkle, flaw, cellulite you name it. TJ Maxx on the other hand had bright enough lighting but not the glaring fluorescence that will highlight every flaw you already know you have and don’t need the extra reminder.

I ended up with your basic one piece suit, black and white. Its nice and fit well.  Last year’s dilemma over wearing a bikini is no longer a dilemma due to the lovely weight gain I’ve experienced due to much needed medication. I’m not okay or happy with the weight gain but I’m not letting it rule my life as it had in the past. I’m not going to rock the boat and change medication that is already working well in the hopes that I will lose weight. I’d rather be this weight and mentally healthy than skinny and depressed.

Alyssa came home with her yearbook from high school. It was nice to go through it with her and see all the pictures of her and her friends. It brought the reality of her graduating all the more to the fore front. Today she showed me all the nice and wonderful things her friends wrote. It was sweet to read. Especially when the writer was someone she’d known since grammar school. I wrote to her as well. It was easy to write to her, the words just flowed from my heart to the page. Then…I got choked up. Especially when I wrote how God has blessed me with her and now I must let her go to have even more experiences. I’m so proud of Alyssa. She made me grow as a mother while I watched her grow into this amazing young woman. And I have the privilege of watching my younger 2 daughters grow in the same manner.

I’m still amazed at how fast the past almost 18 years have flown by. It does seem like yesterday that I was this young overwhelmed mother of (then) 2 children. I used to put Thomas and Alyssa in the double bus like stroller and walk the neighborhood with them. We were regulars at the Italian deli a few blocks over. Things were much simpler then but to be honest I wouldn’t go back even if I could. Once around that merry go round was enough. I enjoy my Alyssa these days, don’t get me wrong she can exasperate me like no other and she still leaves her stuff all around the house and she doesn’t empty the dishwasher… but I do enjoy her company. She is thoughtful and sweet and most important she talks to me. I pray for her future and that she will enjoy the brightness of it.

 

 

 

 

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.

Broken

I was listening to the radio this morning (I listen to a local Christian station called THE STAR 99.1). One of the dj’s, a woman was talking about her husband watching a you-tube video of a dad with a son who has Down Syndrome. The dad was saying over and over how his son is not broken. The dj and her husband are parents of a young girl with Down Syndrome.

The statement of “He’s not broken” referring to that dad’s son really hit me hard and had me almost in tears. I thought of my Thomas and do I think he’s “broken”? It makes me pause here, writing this. My answer would be that right now knowing what we know about Thomas, that he does have brain damage caused either in-utero or during birth (we’ll never know); no he is not “broken”. I didn’t always think that though.

When he was younger I did think he was broken. I went from doctor to doctor, specialist to specialist, in search of someone who could “fix” him. Searching for the right person with the right combination of either therapy or medications or both to make Thomas “right”. Little did I know that there was no fixing him. He was never broken. Just different. But different in a way no doctor could put their finger on until Thomas was 12 years old. When this prestigious, very expensive neurologist at Cornell University interviewed me for Thomas’ history and then thoroughly examined him; told us what we never expected to hear; Thomas was brain damaged. He wouldn’t get any worse but he wouldn’t get any better either. Imagine being punched in the stomach. That’s what it felt like to hear that after all those years of searching and hoping.

I used to think I’d give anything for Thomas to be like a “typical” child. But who am I wanting that for? Me or him? He only knows what it’s like to be Thomas. And if I were able to change who he is, who’s to say he’d be as wonderful of a person as he is now?

That word,”broken” really challenged me today. Really

Thomas This Week

I’ve been thinking about Thomas lately. He ended up in the ER/Urgent Care the other night for an infection on his leg. He’s fine but did have to have a dose of IV antibiotics. That got me worried a little being that I’m not there nearby but I know he’s in good hands with the nursing staff and residential staff. I have to trust them.

I’ve been thinking of the road we’ve traveled with this son of ours. It hasn’t been an easy one. Many doctors, psych hospitalizations, many med trials and finally residential placement not once but twice. Residential the second time was “easier” because the situation was so dire and my safety was becoming more and more at risk. The school district cooperated with no need to hire a lawyer like the first time. But that didn’t make it a walk in the park. He’s still my son. And my ideal life for him wasn’t for Thomas to live somewhere other than his home, with people other than his family.

My ideal scenario was for Thomas  to stay home until he graduated school at age 21 (special Ed students are educated and receive services until they are 21 yrs old). I then envisioned the perfect group home placement close by to where we live. This is not the reality obviously. Our reality is that we are unable to meet Thomas’ needs here at home, he lives an hour away and I pray for group home placement on Staten Island and not an hour away when he turns 21.

In as little as a few years ago I felt like a failure to Thomas. I’ve written about this in the past. I had distinct visions of me one day meeting our Father in heaven and him being disappointed in me, shaking His head saying, “I gave Thomas to you, what have you done??” I no longer feel this way.  I know Tommy and I did the best we could with the situation we were given. I know I haven’t failed him as a mother. To quote Maya Angelou “We do the best we could with what we knew, when we knew more we did better”. I’ve had people ask me if that quote was an excuse for doing a bad job. My answer is no and the quote is quite simple and true. It puts my mind at ease as Thomas’ mother because the more I knew about my son and his diagnosis’ the better I did at getting help for him.

My other favorite quote is a bible verse from Romans 5: “3Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4and endurance produces character, and character produces hope, 5and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” My suffering has produced endurance, I have character. I certainly have hope and I know I have God’s love.

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.
 

Looking Back

I’ve been doing this bible study specifically for moms of special needs children (the name of the book is a Unlocking the Treasure by Bev Roozeboom  ). It’s really got me digging deep in my faith which I guess is what it’s supposed to do.  It also asks a lot of questions some meant to be shared wth a group, others not to be shared. And I tell you a lot of what this woman writes really brings me back. Back to when Thomas was very young and many things were new. Like the first time I ever heard the word “retarded” pertaining to my son who was 3 yrs old at the time. The doctor who told me was so very cold and blunt. No bedside manner at all.  I refused to accept it and insisted this cold hearted man write an addendum in his report of how much I vehemently disagreed with him. I knew there was something wrong with Thomas but to tell me he was mentally retarded told me nothing but an IQ score. It didn’t tell me why he hit all the time and threw terrible tantrums or why was speech impaired.

In the bible study Unlocking the Treasure the author asks if anyone showed you compassion when you realized your child was special needs. The day I was told l that my son was “retarded” one of my husbands best friends brought me flowers and took me to a movie; a comedy.  When I look back it was exactly what I needed at that time and an act  full of compassion.

This study is also full of how much The Lord loves us. It’s mind blowing and humbling all at the same time. That the God of our universe loves us and wants us to seek him…I think of how much I love my children, how much I love Thomas after all he’s put me through.  God loves me more than that. It’s hard to grasp His love for us and wrap my brain around it.