It’s funny when there’s no one specific diagnosis for your child. There’s no banner to wave or cause to support. No dinners or fundraisers or awareness day. Specifically my son. Thomas was first diagnosed with bipolar disorder shortly before his 6th birthday. This was the first diagnosis to try and explain the behaviors we were dealing with. And it made sense at the time (still does for some behaviors). About 5 years ago we saw a well respected neurologist who in combination with Thomas’ history and test results (MRI, IQ tests, etc…) declared our son as one with “static encephalopathy” which is short for brain damage that won’t get worse nor will it get better.
I covered these diagnosis in the very early entries of this blog but I don’t expect anyone to remember, if you do I’m impressed :). Anyway I find myself sometimes envious of those parents with specific diagnosis. Not envious of the specific diagnosis believe me I don’t think any special needs parent has it easier than any other special needs parent.
I think I know what I sometimes miss as Thomas’ mother. When he was first diagnosed bipolar I dove into an online support group and found the most wonderful people there. The support I received was second to none and the people were so full of compassion. They had knowledge either learned first hand or they were very well read keeping up on all the latest literature. I even attended a fund raiser with one of my friends (Diane) and we had a ball. These days with Thomas not living home and not being “exactly” bipolar I don’t feel identified with any such group. I still adore and keep in touch with the people I met but we don’t just see our “kids” as just with bipolar, we support each other as parents on a similar journey. As parents period. Parents who have a child with special needs. Overall I think that’s what it should be about. We’re all parents dealing with situations outside the “norm” when raising our children. We all have similar feelings about certain situations. There are many universal emotions we all go through. Although, to play devil’s advocate to myself I do understand certain disorders/diagnosis do have specific issues only another parent or care giver would understand. On the other hand, one of the best conversations I ever had was with a woman I had never met. I was given Jeanette’s phone number so I could speak to another parent who’s child was aggressive to her and they had to place their son in residential care. Jeanette’s son is autistic, but diagnosis didn’t matter one bit. We met and bonded over similar behavior, similar emotions, similar fears. We spent over an hour on the phone talking and even laughing.
These days with Thomas away at school I don’t get many opportunities to talk with other parents like I used to. His school holds events here and there but we’re not always able to go due to the distance and the girls’ schedules. Some days I miss being a part of that “group”.
I read on a friend’s facebook post today, “God didn’t bring you this far to drop you on your head”. That statement made me literally stop in my tracks. The post was not directed towards me but rather a friend of this friend but in my heart I know I was meant to see that. How could anymore be more true right now, to me anyway. I’ve been having a hard time lately trying endlessly it seems to figure out what exactly I’m here for. This being a SAHM gig is getting stale to me and I feel the need to *do* something but what that something is? I’ve been wondering have I been forgotten by God? Maybe he’s forgotten about his plan for me? A silly thought yes I know. Then after reading my friend’s facebook post I realized that God hasn’t forgotten me, he’s brought me this far hasn’t he? Why would he then drop me on my head? He wouldn’t. His love is far greater than that.
It never ceases to amaze me how great and awesome our God is. He’ll accept our anger and still cover us with His grace, He’ll always be sovereign even though we accuse Him of being unfair. He is and always will be our God and I give thanks to Him that He will never drop me on my head after bringing me as far as he has brought me. To His glory may all things point. He will never leave us or forsake us. I need to write these things down as a reminder to myself and maybe someone else needs to read it as well.
I will continue to pray and praise Him even in the darkness He will shine His light and I know that He is near.
I remember before I became a mother, before I had kids. I was good with kids. I used to teach gymnastics to children of all ages, like 4 yrs to 14yrs ish. And the kids liked me. I knew it all too haha! Like everyone else did before you have that first child that totally rocks your world in ways you could never imagine. Before I had kids I had all these things my kids were never going to do, see on television, or eat, I think I even continued that ridiculous image up until Thomas was a year old. Silly.
To say Thomas rocked my world is an understatement. I mean we went through the whole newborn adjustment period all new parents go through. Then at 6 months we had the CT scans, skull x rays, the helmet, Physical therapy, etc… I seriously wouldn’t wish it on anyone. But we got through it. I never would have even for a millisecond thought that would be my life with *my* child. Never. I , like many other Mom’s was supposed to have this totally typical child who was all sorts of wonderful and did all sorts of typical things. I’m sure other Mom’s of special needs feel the same way. Don’t get me wrong, I’m not bitter woman, Thomas is who he is and I love him all the same, I just NEVER thought our lives would turn out the way they did. Sometimes I wonder how we got through it. Neither one of us were particularly “religious” in the early years, I know I did pray but I didn’t have the relationship with The Lord I have now.
I remember the person I was before I had Thomas. I knew it all man, yes I did. I’m thinking I wasn’t alone in that attitude. Honestly I wouldn’t have liked to continue on that path, that road of knowing it all. Thomas broke me down and made me who I am today. Or should I say The Lord broke me down using my son as an example to me to be different, to grow a different way. Yes, I think that is a more correct statement. When I suffered from depression there is a part of me that believes The Lord broke me down there as well, that I was maybe getting too cocky, or comfortable perhaps redirection was needed. I don’t know it just feels that way. I’ve learned a lot from the depression, things that would probably have gone un-noticed by me if the road didn’t turn the way it did. I’m NOT saying it was this magical, mystical, exploring time, not at all. It’s just the way I feel and believe.
I know I’m not alone in sitting there wondering where that original vision of life went. I’m sure many lives are complete 360 degrees from where one started. It’s really amazing isn’t it?
I’ve been feeling discouraged that things are not moving fast enough or in the right direction concerning my business. For those not in the know I shop either for a client or myself and I specialize in the thrift. I find designer items and sell them. I love the thrift, I love the thrill of the hunt. Www.nayaudo.com is my website that is not updated, I know I’ve posted it here before.
Anyway, I’m convinced God hasn’t divulged his plan as of yet, meanwhile I keep telling myself right now I’m exactly where I’m supposed to be. It’s funny because when I was waiting on a residential school for Thomas I knew one would come along but on God’s timing not mine. I was so certain and I was right, God and the Holy Spirit made sure Thomas arrived at where he’s supposed to be.
I need to find that same confidence in knowing that I am right at this time in my life. God has put me exactly where he wants me to be for now and he will decide when things are to move. Sounds confident doesn’t it? I need to instill those words in my soul and let it be my answer when I begin to have feelings of doubt and frustration and discouragement. He is faithful.
In other news, our church is performing a Live Nativity. Actors with costumes act out Mary, Joseph and Jesus in the manger and the shepherds arriving and then the wise men. It’s so moving and just beautiful. The choir (which I am a member of) sings carols and songs about His birth. It’s all so amazing when you really think about it. The birth of the man who will become a Savior and die a horrible death to pay for our sins. Christmas is about His birth. The ultimate gift of salvation. It’s miraculous.
When I spoke to my son on the phone the other day I didn’t mention that I felt sad afterwards. Sad that this is his life away from us. Before we had to take him off the one med that produced stability I had things pretty wrapped up for Thomas. He was in a great school, awesome recreation programs and on the waiting list for group home placement for when he turned 21. Thomas was also pleasant to be around. High maintenance yes but not aggressive and well liked at school and his other programs. It’s only recently have I realized that my way is not the way things were to go. As my husband likes to say, “We’re not in charge”. He’s right.
When I think back to actually admitting Thomas to residential; as his mother I literally gave them my son. I couldn’t live like that anymore and neither could he. I was still spiraling from depression and everything just felt so hopeless. I realize now that our situation was not hopeless. I did love my son enough to want him to get help even if that meant handing him to other people and admitting I couldn’t do it.
I think what hurt the other day was the cold water reality that “my way” that I worked so hard for wasn’t ever going to happen. It really bothered me and it took a therapy session to unearth that in me. I’ve had time to digest that fact and I’m ok with it. What matters most is that Thomas receives all the supports and help he needs. He also needs his mother. I need to remember that, he’ll always need me here and there just like the girls. Heck I still need my mother.
I wish I had something deep and philosophical to write about the love and courage it took to allow other people to help shape my son’s future. I don’t. I can only say that it stings even hurts sometimes but it will be totally worth it to watch him grow.
Meeting the Lord. I remember the first time I met The Lord and I treasure that memory. Treasure it as I should. I figured it would be a once in a lifetime meeting but I was wrong. I didn’t know you could meet The Lord more than once and I am in such awe of Him. The feeling of peace and excitement after you realize what just happened is almost indescribable. It makes you fall in love with Him all over again and wonder how you ever had moments of doubt.
The first time I met The Lord, I was in my car as I was stopped at a red light about a mile from my house. I was listening to the song “Praise You In This Storm” by Casting Crowns and I was crying my heart out. Thomas was back in the hospital and I was so angry and tired of it all. Most of all I was angry. As the song played the lyric, ” and every tear I cry you hold in your hand…” gave me a distinct vision of Jesus standing behind me cupping his hand to gather my tears. My anger faded and I realized that emotion was gone. This really happened and I then understood what it meant to meet Him. He truly meets you where you are. And until that day I didn’t understand that concept until it happened to me that morning sitting at a red light.
I love writing about The Lord. I love looking back at memories a year ago, 5 years ago, even the past week and recognizing when His hand was blatantly at work that there could never be another explanation. When the Holy Spirit moved and things happened.
I wrote my last post about boldness and wishing I were more bold. I still wish that and when I pray I ask for boldness. God is amazing and I know he has a plan.
There are many times I feel unsure of what to write. I’ve visited the sites that give you ideas (thank you Rob), but I don’t think they are “me”. I like to write about what is on my mind even though whatever that topic may be might not be as interesting to a reader as it is to me. Then I ask myself who am I writing for? Myself or an audience? This blog has been extremely therapeutic for me. I’ve never been so honest about our life with Thomas. I never thought I’d be so honest about dealing with depression and medication and therapy. I never thought I’d receive the feedback I did because of my honesty. So I guess I’m writing for me and an audience even though I know my audience varies from time to time.
When I look back to a year ago I thought I was doing “well” handling the depression. I can see now the difference a year makes. Last year I was not doing well at all and I thank God I can see the difference today. A year ago had I ran into the mom I wrote about in my last post I probably would have broke down in tears explaining Thomas in residential school. I didn’t even come close to that the other day. And as an added bonus, Janice told me I looked great. We all know what an ego boost a compliment is.
I truly wonder what I will be reflecting on a year from now. I pray it’s the take off of my business but if not it will be ok as right now I know it’s in God’s hands and if He feels it’s not to be then it is not to be and God will have other plans for me.
This morning I ran into a mom I met through one of Thomas’ recreation programs. Her name is Janice and she’s such a nice person. Her son is not as high functioning as my son and she works so hard to make sure he is in the correct programs. Her son is in his early twenties I believe. Anyway, it was so nice to see her, I told her Thomas wasn’t attending the recreation program anymore as he’s now in a residential school. Her face immediately changed and she said to me, “You love your son so much that you did this for him, you got him into a residential school for him. You and your husband made that decision and I know it was hard. You really love him. I don’t think I love my son as much because I can’t let him go.” Turns out Janice’s son was in a residential placement a few years ago but she was very unhappy with how he was treated so she took him out.
I almost fell over hearing her say those words. Fell over at the fruit and vegetable stand we were chatting in. I told her that of course she loves her son that she did do residential but it didn’t work out, it wasn’t the right time. And I mean every word I said, I’m not one to patronize.
We chatted more about our sons, I gave a quick summary of Thomas’ behavior that ultimately led to us having to chose residential. Janice completely understood and said her son isn’t as aggressive but some days are very difficult. I understood her.
These days Janice has created a program for her son and similar functioning young adults. There’s socialization and activities, I was so impressed with what she has created and now has up and running. It’s amazing really.
It really shows how God works. If her son had stayed in residential, I wonder if would she had been as driven to create this program ? It’s also amazing that I ran into her now, not when I would have burst into tears trying to explain things. Today I was able to hold a normal conversation which is what one is supposed to do. It was nice to talk to another mom of a special needs child.
It was very nice to hear someone “in the know” say that I love my son so much but I don’t think I love my son anymore than she loves hers.
I’m sitting this morning hanging out with my older girls. Daniella asked me why I see Nancy. I always assumed she knew why. I explained that I’m being treated for depression. She was okay with this. I figured she would be. Alyssa said she already knew. That’s cool. My house has now returned to its relatively quiet state now that Thomas has gone back to school.
I love when my girls are getting along and we sit here and talk and laugh. Right now they’re talking about the Christian youth conference they attended last weekend. They LOVED it. I’m so happy for them. To see them walking with The Lord and getting pumped up to go to bible study and youth group and hear them sing Christian songs is more than I ever hoped for when we started attending church regularly a few years ago. I remember some Sundays it was like pulling teeth to get Alyssa there. To see her now so passionate makes me so grateful to Him.
They seem unphased that Thomas went back early. Daniella asked what happened and I gave her the cliff’s notes version. She told me I didn’t have to tell her if I didn’t want to. I didn’t mind. Then she asked me about Nancy.
Right now Daniella is singing and dancing to a Christian rap song she heard at this conference. I’m usually not a fan of rap but for this I’ll make an exception ;).
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.