An Immediate God

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Lately, I’ve been feeling a bit detached from my faith. Sure, I go to church, pray before meals, toss up little “popcorn” prayers throughout my days. But, I’m not involved in any kind of Bible study. I’m not serving in His Name anywhere.  I’m not reading any of my dozen or more devotional books that I have on my bookshelves. I’m not spending any kind of quality time praying and listening for answers. I’m not being still….at all.

One night, recently, I was praying that God would give me the self-discipline I needed to get back into His Word and take time to pray more often instead of filling my days with just “stuff.” I went to bed that night telling God that I needed Him to get me back on track and into more of a routine to make sure that I’m taking the time to slow down and read the Bible and listen to what He has for me. At the time, I thought that was a pretty good prayer. I thought that was what I needed. I went to bed that night determined to “try harder” the next day to spend time with God.

I woke up the next day and got the kids off to school. Before starting the rest of my day, I quickly grabbed my copy of Jesus Calling. If you have this devotional, you know how absolutely amazing it is. If you aren’t familiar with it, I highly recommend picking up a copy. It’s a quick read but each short devotional is filled with amazing insight and guidance.  On this particular morning, God did not disappoint. I started reading the following entry:

Let Me infuse My peace into your innermost being. As you sit quietly in the Light of My Presence, you can sense Peace growing within you. This is not something you accomplish through self-discipline and willpower; it is opening yourself to receive My blessing. (emphasis added)

WHOA! God just used my exact same words! He heard my prayer and gave me an immediate answer. Even though I know that God answers prayers all the time, I was taken aback. He’s answered many of mine over the course of my lifetime. But, this one felt like I was having a dialog with Him. I asked him to help me be more self-disciplined and He answered right away. Self-discipline was the last thing I needed. What I needed was to just sit quietly with Him and open my heart to receive Him and all His blessings.

I decided to dig a little deeper into self-discipline and willpower.

Willpower is defined as; self-control: the trait of resolutely controlling your own behavior.

Self-discipline is defined as;  training and control of oneself and one’s conduct, usually for personal improvement.

The common denominator in these two definitions is control of oneself. This is the exact opposite of what having a relationship with Jesus Christ is all about. Having a relationship with our Savior is about releasing that control. It’s about allowing God to control our steps and guide us in His ways. This is something that is very hard to do, especially in our culture and society. We live in a world where people seek control in all they do. There are even those who panic when they feel they don’t have control. Many of us have come across what is commonly known as a “control freak.” For many of us, that label hits pretty close to home. We have remote controls for TV’s, toys, radios and cars! That’s what we are programmed to do….control things. So, this devotional was more of a challenge than I originally had thought. Give up control? This was not going to be an easy task.

Now, don’t get me wrong. There are at least a dozen Bible passages that talk about having self-control. That’s not what I’m talking about. What I’m talking about here is not just a one time thing. It is something that we need to do everyday…all day. When we wake…hand the day over to God’s will. When we face trials….ask God for His guidance. When we are in conversations…ask God to bless our speech and those that are listening. When we are angry that our children have disobeyed us once again….stop, breathe and ask for God’s mercy and grace to flow through us to them (that’s a hard one for me sometimes). When we have an opportunity to be Jesus for someone…ask God to give us the words THEY need to hear and not just what WE want to say.  Giving up control isn’t going to be easy. Shoot, I’m actually nervous about what that’s going to mean in my life. But, the devotional continues:

You have learned to thank Me for hard times and difficult journeys, trusting that through them I accomplish My best work. You have realized that needing Me is the key to knowing Me intimately, which is the gift above all gifts.

He’s right, you know. He has accomplished some of His best work in my hardest times. Without those tough times, I wouldn’t be who I am today. I wouldn’t be where I am today physically, emotionally and most of all, spiritually. Without His work in my life, I could never grow in my relationship with Him. A relationship that began as an acquaintance but is growing towards intimacy every day.

So, I ask you, who’s in control of your life? Can you give that up and allow God to do “His best work?”  If we open ourselves to receive God’s blessing, there is a whole world to discover that we may never see if we choose to “go it alone.” There is a whole lot we could miss out on if we only bring God along for the ride. The big question is…can we let go enough to let Him drive and allow ourselves to receive His blessing?

Isaiah-58-11

Train Up a Child…

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Proverbs  22:6 Train up a child in the way he should go; even when he is  old he will not depart from it.

One of the things in life that I am most thankful for is that I have this intrinsic desire and ability trust God. I know that He is in control and I don’t worry about my future…until I became a parent. The two areas of my life that I worry about now are my son and my daughter.  Will they make the same mistakes I made? Will they get their hearts broken? Will they go to college? Will Allison be able to live independently? What if they trust the wrong people? I mostly worry about things I can’t control which only gets me more worried. It’s not a good cycle to be in. However, I recognize it and I am working at letting those worries go and place my trust in God….fully.

One of the things I worry about the most is if I am doing all I can to raise my children to love God and desire a relationship with Him through Jesus. We pray before every meal (even if we are eating out). We go to church on Sundays and most of our friends that we hang out with and talk to are from that church. We are involved in our church and our community always trying to help where we can. We encourage our kids to talk to God when they are struggling or thankful.  But, is it all sinking in? After all, we only have about 10 more years before they go off to college. They need to be prepared! See? Worry. It’s not a great way to live.

Last weekend we were visiting my in-laws for Thanksgiving. My daughter was having a meltdown. I calmly told her (and yes, I mean calmly. I was so proud of myself for keeping my cool) that if she didn’t “get a grip” on her emotions and calm down she would need to go to bed and miss out on some family time. I got her into the shower (always a good place for her when she’s overwhelmed because of her sensory issues. The water helps calm her) and went to go get her pajamas. When I came back I could hear her talking in there. I tried to listen before going in. She was praying! She was asking God to help her calm down and praying that He would change my mind so she could spend more time with the family. Needless to say, I got goose bumps and was overwhelmed with joy and peace and reassurance.

I didn’t go in right away. I went and told my husband what I had just witnessed. He knows how I worry about whether our teachings are getting through to her or whether her brain can comprehend something that she cannot see or touch. We hugged and at that moment I realized that I need to stop worrying. Instead I need to just keep doing what we are doing to encourage a relationship with God in our children. The Lord loves these kids more than I ever could. It’s our job to “train them up.” God will do the rest. We cannot soften our kids hearts to receive God’s gift of His Son…that’s His job. But, we can teach them, pray for them, pray WITH them and steer them towards a life with Jesus at their side to guide them and carry them through their lives.

After this experience, I have learned that I need to just relax and allow God to work in their lives. I know I’m not the first person (nor the last) to worry. They Bible is FULL of verses about it. Here are few that serve as a great reminder in those worrisome moments.

Philippians 4:6-7 (NIV) 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Luke 12:25-26 (NIV)  25Who of you by worrying can add a single hour to your life? 26 Since you cannot do this very little thing, why do you worry about the rest?

Instruction for what we need to be doing as parents can be found in Deuteronomy.

Deuteronomy 6:6-9 (NIV)

6 These commandments that I give you today are to be on your hearts. 7 Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. 8 Tie them as symbols on your hands and bind them on your foreheads. 9 Write them on the doorframes of your houses and on your gates.

If  I focus more on what I can control and less on what I can’t, my life could be so much more productive. Trusting God and surrendering our children to His will, frees me up to be the mother that they need. It allows me to just enjoy their presence and enables me to create a home that they can flourish in. Worry has been robbing them of the mom they deserve. Worry has been eating away at my patience, my stamina and my love as a mother. Letting that go is going to free me up to focus on today. What are my kids needs TODAY? Tomorrow I give to God. They were God’s children first and foremost. They are a gift from Him. It’s my job to make them feel like that gift everyday.

Keeping the Home Fires Burning

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I wrote this article a few years ago and haven’t really tried to get it published. So, instead, I decided to share it here. I come from a family with military roots and am proud of my brothers, brother-in-law, cousins and grandfather who all served so selflessly. This story, however, is about the spouses and children of our brave soldiers and the sacrifices they make so we can live in a free country. I salute them and vow to support them in any way I can.

Keeping the Home Fires Burning

Driving down the road the other day I saw several yellow ribbon magnets on cars saying “Pray for our troops” or “support our troops.” It got me thinking about the sacrifices our troops make; many making the ultimate sacrifice with their lives. I have the privilege and honor of knowing several of our country’s bravest and I think about all that they give to protect our country and the freedom it provides. I have seen the preparation that goes into the deployment and the homecoming. I have seen the tears of sadness and longing as they leave, as well as the tears of joyfulness and relief upon their return. I have witnessed the loss of a dear cousin and the deep despair in his wife’s and daughters’ eyes.  I’ve seen many pictures of the hero’s welcome they receive when they get home from their deployment. I’ve seen the pictures on the Internet of our soldiers relating to children in the countries we are helping and seen some where our soldiers are sleeping in a man-made ditch near their Humvee for a night of “rest.” Seeing all this causes my pride to swell for just knowing several people who have served or are serving in our nation’s military.

But, what about what we don’t see? What about the sacrifices of their families? My sister, Kate, is married to a Marine Corps fighter jet pilot. In their 11 years of marriage they have moved 4+ times; living in base housing, hotels, rental homes and finally their own home. They have been blessed with three beautiful boys.  But, they have been living separately for the majority of their time together as he was either deployed or away from home training for deployments. I have told her numerous times “I don’t know how you do it. I know I could never live that life.”  It takes a very special and strong woman to willingly take on the responsibility of being a military wife. My sister does it with a style and strength that many women don’t possess or don’t wish to possess. As a military wife, Kate willingly becomes a part-time single mother. The difference between her and other single mothers is that a part of her is always attached to the man she loves, fighting for the freedoms and protection of people she will never meet. The man that makes her complete is still there for her, but the longing is something that takes her into many a late night praying for his safe return. Her need to feel comforted and loved goes unfulfilled for months at a time while she waits. The time between phone calls or emails is painful and filled with anxiety. She fills that time with children’s activities and the daily routine of life but when all the kids are asleep and she lies in her bed at night, he’s not there.

For those of us that don’t live this life, it is easy to take so many things for granted. When my son says something that made me laugh I often pick up the phone and call my husband to share it with him. We laugh together and tell each other “love you. See you at dinner.” That doesn’t happen for a military wife during a deployment. When I get cold in the middle of the night, I can warm myself in the arms of my husband and drift back to sleep. That doesn’t happen for a military wife during a deployment. When the garbage needs to go out, the lawn needs to be cut, the toilet needs to be fixed or a catch needs to be had with a child; I call on my husband. That doesn’t happen for a military wife during a deployment.

Ten years ago my nephew entered into this world and blessed our entire family. I flew down as soon as I could to meet him and congratulate Kate and her husband. As he slept in my arms I never thought about the sacrifices he would have to make as well. I’ve watched him grow into such a strong and smart boy over the last eight years. But, I’ve also watched him grow wise beyond his years as he took on the role of “man of the house.” This role has matured him ahead of his peers. I have talked with Kate concerning her fears about the boys not knowing who their dad is when he gets back from being gone for so many months. I have seen them get creative with ways to make sure their young sons stay connected to him somehow while he is away. I can only imagine the fear of not knowing whether your child will recognize their own father. I think about the missed father/son camping trips with his Scout troop. I think about the missed soccer games with the other dads cheering on their sons. I think about long distance Father’s Days and missed birthdays. Children grow and change so fast. A child experiences so many new things in a day let alone over the course of a few months. These experiences are shaping who they are going to be as they grow. What a sacrifice to have to make at such a young age. Again, I can’t imagine my children going through this. Thankfully, children are oftentimes more resilient than their moms and dads.

During World War I there was a song written by Lena Ford and Ivor Novello. This song talked about military families and encouraged them to “keep the home fires burning.” Time and again this phrase is used but we often don’t think about what that actually looks like.

So, the next time you see a yellow ribbon honoring our brave servicemen, remember the heroes behind them. Remember that there are wives and husbands who are sharing their spouses with us so we can be free. There are children sharing their dads and moms with us so we can feel safe. There are those that have paid the ultimate price to share them with us. They keep going on and doing what they do best; living the lives they chose as a sacrifice for their country and what it stands for.  They truly do keep the home fires burning.

Chas Homecoming. The picture says more than my words could ever say….

The last time Chas saw Max he was only a few months old. He’s a week shy of his first birthday in this photo.

A recent picture of Max missing his daddy while Chas is away from predeployment training.

This picture makes me cry every time I see it. My nephew is so overwhelmed with emotion upon his daddy’s return.

Chas hugging Kate so hard….months of hugs and kisses all wrapped up in just one.

Zack is the first one to find daddy in a sea of camouflaged soldiers.

A Family Reunited! By the way, this homecoming took place at 2:15 in the morning!

 

THANK YOU TO ALL OF OUR VETERANS AND THEIR FAMILIES!

YOUR SACRIFICES NEVER GO UNNOTICED OR FORGOTTEN.

YOU ARE ALL TRUE HEROES!

(Two-part entry) Surviving Sandy and Much Needed R & R

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When I decided to start blogging I promised myself that I wouldn’t just post stuff so I could post stuff. I knew that this would lead me to have a blog that was either widely sporadic and at other times more frequent. Given that my last post was weeks ago, I’m into the sporadic category right now.

As many of you know, I live in New Jersey. In the last week we have experienced a devastating hurricane (thankfully my family and I were spared any damage or difficulties), a 2.2 earthquake and last night our first snowstorm of the season. That’s enough to make this Chicago native want to run for the hills….or maybe the beach in Mexico! It’s been crazy watching all the devastation of our state across our TV and computer screens. The places we visit during the summer severely damaged and in many cases, completely gone. Seeing those in my community without power for 9+ days when the temperatures are dipping so early in November was saddening and even maddening at times. At the same time, I am so thankful that our house was completely spared. We did not have one tree down. We did not lose power or heat. We didn’t lose all our food in our fridge/freezer. For the most part, we came out unscathed and we are so thankful and blessed.  However, I also was feeling a bit guilty for barely being affected when so many had lost EVERYTHING.

One way to deal with that was to give back. With all that we were blessed with after Sandy hit the East Coast, we were doubly blessed because we were able to provide hot showers and meals for those in need. Months ago I had begun to plan a little getaway for my husband and my anniversary on November 1st. Originally we were headed to Atlantic City. Thankfully, I had decided to change those reservations months ago to somewhere else. Our trip would have been canceled because of the all the devastation there. Instead we were scheduled to head to the mountains of New Hampshire. We debated canceling the trip in light of all that was going on in New Jersey. Finally, we decided to go anyway. It was all set up and the kids were going to their grandparents in Pennsylvania anyway. After we made the final decision to go, we learned that a young couple with two young children were without power and that their apartment was 55 degrees and dropping.  Long story short….we gave them our house while we were gone. I felt so much better about going on vacation in the midst of so much destruction by being able to help someone else.

As my hubby and I drove north we were struck by a few things. First, there were many caravans of power trucks and tree cutters headed south on the other side of the highway. This was so great to see. We knew that there would be a light at the end of the tunnel for those hardest hit…literally. We drove by a truck carrying brand new cars on the back that had writing on all their windows “won’t start. flooded. salvage yard only.” We saw countless trees down all the way into Connecticut. We finally found a gas station that had power and no lines since we couldn’t even try to fill up in NJ because it was an odd-numbered day and both our car’s license plates ended in even numbers.  This storm was fierce and we were thankful to be able to escape for a few days to celebrate 15 years as husband and wife.

Now….part two of this entry…..

In fifteen years, this is the first time that my husband and I were able to go away….alone….for more than a night. To be honest, I was worried because this was going to be the most time we’ve spent alone in so long. Would we even enjoy each other’s company? Do we still know each other outside the confines of parenting and bills and work? We love each other, but would we still like each other? Yes, these were the thoughts going through my mind. Sad but true.

My husband is not much of a traveler. It’s never been a big priority in his life. Me? I LOVE traveling and getting away from it all. I don’t get bored even when there’s nothing to do. I just bask in it because I know it’s short-lived and that I will hit the ground running as soon as I return. I was seriously worried if he was going to be able to “turn off” enough to enjoy himself and allow us to reconnect. I was pleasantly surprised. We visited New Hampshire at the quietest possible time. They call it the “slow” season. It should have been called the “closed” season. Everything was closed! There was nowhere to go and really not much to do. This ended up being such a blessing because then we were forced to slow down. We were forced to be creative. We forced to just be together without distractions. Thankfully, all my fears that I described above were relieved. We laughed and shared stories. We talked and talked and talked. We drove through a little town not far from where we were staying and walked through antique shops. We found a stop along the highway high up in the mountains where it was snowing and had a snowball fight. We ate dinner without rushing out to relieve a babysitter. We sat in the hot tub a couple of times and enjoyed the quiet because we weren’t hearing “mom, dad, watch this! ” *SPLASH* We genuinely enjoyed each other’s company and  truly celebrated our marriage and our love for each other. YAY! Not only did we love each other….we still LIKED each other and liked spending time together.

Now the trick will be to hang onto that at home. To remember to laugh. To remember to slow down. To remember to just be with each other.  At first I was worried about how our daughter would be away from both of us for 6 days. I was worried about her schedule and her routine being disrupted. I was worried about her making poor or dangerous decisions while with her grandparents. The first day that we were away I made a conscious effort to just let it go. Worrying was going to get me nowhere. If she did any of those things, I would deal with it later or just let my in-laws handle it. If she melted down (which she didn’t at all) they would just call us and let her talk to us until she calmed herself.  I had done all I could to prepare her. I packed her “comfort” items and talked with her about my expectations for her behaviors. She said she would be good and listen to her grandparents and for the most part, she did.

What I realized is that they probably needed just as much of a break as we did. They needed to unplug from the busyness of their lives and just relax. They got a break from my nagging them to clean their rooms, do their homework, read for 20 minutes, pick up their “crap” from all over the house. Just as we got spoiled by the beauty of New Hampshire they got spoiled by their grandparents they don’t see too often. They got to ride their quads every single day with their uncle. They, too, got to relax and just be.

If you are overdue for some time away with your spouse, schedule something. Just do it. Don’t worry. Just do. The kids will survive and so will the family or friends who watch them.  All parents, especially those with kids with special needs, need time away to rejuvenate. I am praying that this was something to jumpstart us into doing this more often. We can never let another 15 years go by without doing this. Yes, we’ve gotten away from the kids during that time but it’s always been with other couples. We need time alone…together….no one else. That is how we are able to reconnect. That is how we get to know our spouses better. That is how we become better parents, wives, husbands and people.

Activities of Daily Living with a child with FASD

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As any parent knows, parenting is not an easy job. As any parent of a child with special needs knows, it’s never easy.

As parents our days are filled with shouts down the hallway to “get dressed, your bus is coming”, deciding what to make for breakfast and lunch, getting each kid out the door on time, trying to get yourself a shower, cleaning up the house, doing the laundry, planning for dinner, organizing the calendar, getting the kids off the bus, getting the homework completed, sports, etc…etc…etc…

These can be exhausting in and of itself. Now let’s look at that day through the eyes of a parent of children with special needs.

Our days are filled with shouts down the hallway to “get dressed, your bus is coming” then realizing that if you don’t make eye contact with your child, they hear NOTHING. Deciding what to make for breakfast and lunch can be a bit easier because many of these kids crave routine and that oftentimes includes eating the same thing over and over again. Getting the kids out the door on time can be a challenge because, if you’re like my family, we have kids in different schools. This means busses coming at different times. You miss one, and it throws everything off.

Now for the shower. Oh, the shower…a place where we can be alone and just let warm water flow over us. You reach for your new aromatherapy shampoo that you splurged on to treat yourself only to find it….EMPTY? I haven’t even used it yet! How can it be gone? You then remember that your child took a shower last night and in the few minutes you left your child unattended so you could answer the phone, they felt the need to clean the shower walls and bathtub…with your expensive shampoo. It’s also a great surprise when they use your lavender-scented vaginal wash as shampoo because they had dumped their dollar store shampoo down the drain to see the bubbles come up. There’s something to be said for having a house with a private master bath. I think I’ll put that on my list of things I can hope for one day.

You get out of the shower and dry your squeaky clean hair on the towel (and I’m serious about the squeak because I had to use a bar of soap to clean my hair since there was no shampoo). You arm yourself with cleaning supplies, vacuum, garbage bag and a dust rag and set off to clean the house. Unfortunately it’s not just dust bunnies you find under the couch. Oh, look, there’s my ring that I’ve been looking for that disappeared from my jewelry box. Great! It’s right next to a yogurt container that still has the spoon in it and is spilling over with ants crawling all around. I must have forgotten at some point to put the lock back on the refrigerator door before going to bed. Note to self: stop doing that! You finish cleaning and start to inventory your booty: candy wrappers, spit out peanut butter and jelly sandwich, string cheese, gogurt, a once frozen pizza thrown behind the couch in the basement once she realized they don’t taste all that great uncooked, 4 juice boxes and something you still can’t figure out what it used to be. All this in a couple of weeks since you last pulled out all the furniture. Wow, she’s good at sneaking things behind my back.

Laundry. Ugh, laundry. A thankless task for any mother. It’s the never ending household chore that I dread the most. I just love it when I find clothes in the hamper still on the hangers because she couldn’t decide what to wear and it just made more sense (to her) to toss it in the hamper than hang it back up. And then there’s the stench of stale urine and other unmentionables because hygiene is something that is just not that important to some kids with special needs.  A cup of vinegar added to the wash helps with this. In this house, I buy 5 gallons at a time. Seriously.

Organizing the calendar is a daunting task for any household with kids. Who needs to be where and when? What nights do you need to start thinking about dinner while scarfing down your breakfast? Which school projects are due this week and what else can we skip in order to get that done? Who has football practice? Who has a playdate? Yadda. Yadda. Yadda. In my house, we have all that but we also have counseling appointments, social skills groups, chiropractic visits and doctor visits. If I’m feeling overwhelmed by the looks of our filled calendar, I can’t imagine how the kids feel!

The alarm on my phone signals the “10 minute warning” that the busses are coming, the busses are coming! Which kid is coming home today? Is it happy Alli? Frustrated Alli? Tired Alli? Sad Alli? The suspense is killing me! Seriously, it’s killing me because I must have any number of “mommy faces” ready to handle whichever one comes off the bus. (By the way, I also feel this way in the morning before she wakes up. We can see several of Allison’s “faces” in any given day.)

Homework time. YAY! NOT! The calendar says we only have 1 hour to devote to homework tonight and there are two kids who need help. There’s a family in Minnesota or Montana (I know it’s somewhere in the Northern Midwest) that has 13 kids with FASD! Holy crap! I can’t imagine homework time in that house. I have trouble handling one (plus another child who is struggling with school)! Hats off and kudos to you Hays Family. I couldn’t do it. There’s just not enough time in the afternoon before bed to get it all done.

So, I’m not saying that families with neurotypical children do not have their challenges. I’m also not complaining (I chose to adopt these amazing kids and I vow to raise them with every ounce of strength I have in me). However, if you know a family that has children with special needs, give them an extra pat on the back to encourage them. Most parents of these kids won’t ask for help. They’ll just “do it all.” If you are a parent of a special needs kid, give yourself a break. Accept the help being offered and get an hour to yourself. Find a babysitter you can trust and go to dinner with your spouse. You NEED it!

Hmmmm, which one would I like to be today? The kettle or the pot? I should take some of my own advice sometimes! Teehee. Whoops!

Hang in there everyone! Cherish these days. They’ll be gone before we know it!

A Little Perspective

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The other day I was driving in the car by myself and listening to K-LOVE radio (96.7 for those in the NYC area). I think a lot. Sometimes I do this too much. This particular day I was thinking about my sweet Alli. It wasn’t long after my “mommy meltdown” mentioned in an earlier post. I was still questioning God on His decision to trust me with Alli and Nate. I was still wondering why He chose me when he knew I would screw up as often as I do. I was thinking back to my days before children and how I longed to be a mom. I remember dreaming about one day having a daughter and a son. I started crying…again…because I felt like I was, for lack of a better term, mourning the loss of the daughter that I thought I would have. No woman dreams of having/adopting a child with special needs. Don’t get me wrong, I knew that I would love whatever child was brought into my life. However, we can never anticipate the challenges that lie ahead for us. I see my friends who have daughters the same age as my Alli and their relationship is very different from the one I have with my daughter. Confession time….sometimes I feel jealous. This day, driving in my car alone, was one of those days. I began to “mourn” the loss of my vision of who I thought my daughter would be.  Before I could get too deep into this, God grabbed ahold of me and almost literally shook me out of my funk.

I had arrived at my destination, found a parking spot and was about to turn off the car. I had the radio on in the background but was absent-mindedly listening. A woman had just called in and asked if the radio station would take a prayer request. For some reason, I stopped myself from turning off the car to hear what it was. There was something in her voice. A softness and sense of peace that I so rarely hear. Her prayer request was short and sweet. Her six-week old son was just diagnosed with cancer. She asked for peace and understanding because she didn’t know how long they had left with him. Needless to say, I sat there and cried. The radio personalities stopped right then and there and prayed for this new mom and her husband. They prayed that this little boy would be miraculously healed. They prayed that God would reveal to them His plan and how, even should this baby return to God so soon, He would bring joy out of it someday.

I prayed with them and then I prayed for forgiveness. In my focus on what I felt I had lost by adopting a daughter with special needs I had overlooked the most important part. I still have a daughter to hug and to hold. I have a daughter who writes me notes all the time just to tell me how much she loves me. I have a daughter who is creative and funny and makes me laugh all the time. I have a daughter who is beautiful and loving. These parents may never hear their son speak a word. These parents may never feel their son’s embrace. I have all these things. How could I be so self-absorbed.

I sat there in my car for over ten minutes sobbing with my shoulders shaking. I had just experienced one of the many reasons their son was going through this battle at such a young age. A little perspective is all I needed to fully embrace my children for who they are…special needs and all.

Fetal Alcohol Syndrome IMPORTANT FOR ALL WOMEN and the men who love them

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I was going through my facebook notes and came across a few things that I wrote years ago. This one was written the year our daughter was diagnosed with Fetal Alcohol Spectrum Disorder. Just thought I would share with you all. I have a few more that I’ll post in the near future. For now, help me get the word out there!
Fetal Alcohol Syndrome IMPORTANT FOR ALL WOMEN and the men who love them
by Heather VW Friday, November 12, 2010 at 1:36pm ·

I just finished reading a couple books about Fetal Alcohol Syndrome and am astonished by how prevalent this is. As many of you know, our daughter, Allison, was diagnosed with FAS. We suspected this for a long time and am relieved that we finally have an explanation for some of her bizarre behaviors and difficulty with school and social situations. Fetal Alcohol Syndrome is an invisible disease that gets too often overlooked.

The biggest shock that I read was that even ONE NIGHT drinking while pregnant can cause FAS! ONE NIGHT!!!!!! In some cases it is ONE DRINK!!!!! It has nothing to do with what type of alcohol or how quickly you metabolize it. What matters is that the baby cannot metabolize it. Fetal Alcohol Syndrome is caused by PERMANENT BRAIN DAMAGE. This is irreversible. THey will struggle with this for the rest of their lives. Parents of these children will struggle with parenting them the rest of their lives.

This is a 100% PREVENTABLE condition. If you are pregnant, know someone who is pregnant or plan on becoming pregnant…DON’T DRINK!!! No amount of alcohol is safe for your baby. No matter what your doctor tells you!!! Seriously, there are still text books out there teaching future doctors that it’s okay “once in awhile”! THere is legislation to get this changed.

I love Allison with all my heart and I strongly believe that God brought her into our lives so that we can raise her the way she needs to be raised. HOwever, every day is a struggle with her. Every day we don’t know who Allison is going to be. Deep down we know who she is but her struggles define the way the day is going to go. Don’t risk your child’s future for a drink. Wait and you will be rewarded with a child who is healthy and whole!

If you are a mother and you drank during your pregnancy, don’t be too hard on yourself. You were most likely given misinformation! If your child is struggling with academics, making friends, odd behaviors, etc…. get help! It will be hard at first to admit that you had something to do with the way your child is, but in the end you will find peace and understanding as you learn the techniques for raising a child with FAS.

If you have any questions, please feel free to call me. I’m no expert but I’m learning all I can to help our dear Allison live a life that can be productive and enjoyable. Her future depends on us and I am going to do my best not to let her down.

Thanks for listening….please help spread the word about this. This is only a 10th of what I wanted to write but I just can’t get my thoughts in order today. Maybe another day! Feel free to copy this in it’s entirety and share with others. Women need to know that NO AMOUNT OF ALCOHOL IS SAFE DURING PREGNANCY!!!!!

Here is a website as well with tons of information.

http://www.nofas.org/

Allison looking cute in Rockefeller Center. She loves the City!

This One Moment

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It’s amazing how one good moment can practically erase weeks of bad ones. I experienced one of those moments last night. Our son was spending the day and night at his cousin’s house so it was just us with Allison. We ended a day filled with yard work with a soak in the hot tub. My husband stays in all but 20 minutes before he’s done and gets out. This leaves me with the fish; AKA Allison. We turn the temperature down on the hot tub because she could stay in for hours. So, I guess that makes it more of a very warm tub. Anyway, after Alan gets out, Alli and I stay in for about another hour. In between belly flops and cannonballs (Alli, not me!) I manage to get her to sit for a bit and relax. As she lay there in front of the one of the jets she says, “Let’s talk, mom.”

“What do you want to talk about?” I ask.

“I don’t know. Ask me some questions.”

Not wanting to get too deep too quick I ask about her favorite part of the day [hot tub], what she wants to be when she grows up [vet], and her favorite color [bright pink]. I decide that I’m getting some pretty quick answers so I throw in a doozy. I asked her why she steals and hides food. I lean my head back to gaze at the stars, expecting the same answer I always get; “I don’t know.” To my surprise, I get an answer that really does explain why she does it. I’m shocked that I got such a fluid and thoughtful answer. I let it go, for now. I got the answer, now I needed some time to figure out what I was going to do with it. As great of a moment this was, it is not the moment that erased the bad stuff of the last few weeks or months.

We continue to talk and I ask her “What are you looking forward to most in the 4th grade A) making a new friend B) reading lots of new books C) going on field trips (she is in a special education class that goes on monthly field trips as rewards for good behavior.) She tells me C) going on field trips. I was surprised because she spent most of the day telling me how she wished she had a friend who could come over to play and have a sleepover.  Allison only has two good friends who understand her disability and tolerate her anti-social behaviors.  They were both busy. I asked her again and suggested that making a new friend would be better than field trips. She swam across the “warm” tub and put her hands around my neck. She then tells me “Mom, I don’t need a new friend. I have you! You’re my best friend.” My heart melted. She then added, “And I am having a sleep-over today. In your bed!” (unbeknownst to me or my husband)

Over the last few weeks I have questioned my ability to parent a child with FASD. I have questioned God on why He trusted me with this responsibility.  I have wondered if I have damaged my children with my lack of patience. I have doubted myself and cried over my lack of confidence in my parenting. All those doubts were erased in this one moment. This one moment where my daughter, who has trouble expressing herself and sharing her feelings using words, reached out and touched me so deeply that I will never forget this moment.

I finally coerced her out of the tub so we could go to bed. She crawled in between me and my husband, leaning against him for his intense body heat, and closed her beautiful eyes. I kissed her forehead and told that I loved her. She smiled and drifted off to sleep. I lay there watching her sleep and thanking God that He knew what He was doing. He knew that this moment would come along and sustain me. Now, I just have to remember to hang onto these moments during the rough days and cling to the fact that there will be more of these good moments to come.

To Alli I say, thank you sweet girl for gifting me with a moment that I will never forget. Never.  I love you today, tomorrow and ALWAYS. To God I say, thank you, Lord, for the gift of my children.The next time I am feeling down, remind me of this one magical moment.

God Winks…just to let us feel His presence.

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It was June 26, 2012.

The day was a yoga pant-t-shirt-baseball cap kind of day. I got up and got the kids fed before the babysitter arrived. The kids had only been out of school for a few days on summer vacation and were already on my nerves with their constant fighting. I was thankful I had somewhere to be even if it was to be hooked up to a machine for three to four hours at the hospital.

Back story on why I need to be hooked up to a machine twice a week:

Twenty-one years ago I was diagnosed with Leukemia at the age of 19 (for those doing the math, I’ll save you the trouble. I’m 41). I was fortunate enough to have found a match amongst my siblings and had a bone marrow transplant. Unfortunately, my brother’s bone marrow didn’t take as well as they had initially hoped and I developed what’s called Graft Versus Host Disease (GVHD). Basically it means that the bone marrow is rejecting and attacking different areas of my body. My eyes (hence, no tears. Read previous post for that story), gastrointestinal system, lungs and skin were/are affected. For 21 years the doctors have been trying to get my body to accept this new bone marrow. Three years ago I headed down to Maryland to the National Cancer Institute to participate in a study about my disease. Apparently, I’m a medical anomaly. Great! *sarcasm* They recommended Photopheresis treatments. So, twice a week I go down to a hospital here and get hooked up to a machine that processes my blood to help stop the rejection. It’s working. I’ve been healthier since starting it. It’s just not something you look forward to doing.

I get down to treatment. My nurses have become my friends and they can tell that I just don’t want to be there that day. They are surprised that I didn’t call in and take a mental health day as I had been doing several times over the previous weeks. Needless to say, I was surprised too. I was in no mood to be there. I went to my corner of the treatment room and started my own pity party. I just wanted them to hook up the damn machine and let me drift off to sleep and make this whole procedure go by faster.  I love my nurses. They try in vain to help me cheer up. I don’t want to cheer up. I want to be healthy. I don’t even remember what it’s like to be healthy! Begin pity party now….

I finished treatment and headed home still lost in my thoughts, trying to remember how I felt before leukemia. It was a futile effort. I was pretty much on auto-pilot all the way home. Then, it hit me. Not a memory of my pre-leukemia days but a Nissan Altima. Right into the driver side of the front of my car. I had come to a stop at a T-intersection a couple of miles from home. I checked both ways before making my left turn. I saw the Altima but thought he was turning. So, I went. *S*M*A*S*H* That was it! The icing on of this proverbial crap cake of a day.  The dude in the other car just kept calling me nasty names and jumping around the intersection like an idiot (guess he’s not hurt). I called the police. Reports were taken, information swapped, yadda yadda yadda. I drove my limping car home and that’s when I broke down. I just sat in my car shaking and crying (see previous post for how THAT makes me feel).

My pastor’s daughter was my babysitter that day and he came to pick her up. He noticed how shaken up I was and offered to pray for me. He prayed that I would feel God’s peace in this situation and that I would see His presence in my life. He left and I walked up the driveway to examine the damage on the car and take a few pictures.  As I was walking up the driveway, something caught my eye. There it was, plain as day, God’s presence. Immediately following was His peace.  Right there, in the middle of my son’s green bean plant that he brought home from school, was God’s wink that said “I’m here. Rest in me and I will give you peace.”

The best part of it was that I checked this plant every single day looking for green beans to show Nathan. I lifted every leaf looking for new growth. Never had I seen this particular leaf. I would have noticed it! I love butterflies. Since I became a Christian butterflies have had special significance to me. They symbolize rebirth and new life. They symbolize my transformation from my old life without Christ to my new life with Him as my guide. God KNEW that this is exactly what I needed right then. God answered my prayer immediately!

I watched this leaf over the course of the next few days. It never looked this clear again. Some days it was hidden behind other leaves that were probably moved by the wind. Other days it was not as brilliantly green and alive as it was that first day I saw it. But, I knew it was there. Just like I know God’s there all the time. Some days He’s hidden by things in our lives that block our view of Him. Some days He’s not as brilliantly seen because our eyes are clouded over with doubt and worry. But, He’s there. He’s always there. You just have to ask Him for that “wink” that says “I gotcha! I’m here!”

Happy, Happy, Joy, Joy

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I was never a big Ren and Stimpy fan but this song has sadly taken residence somewhere in the deep confines of my brain and it comes out every so often to tell me “Still here!” This morning I shut the front door as my children’s busses pulled away from the house and reveled in the quietness of a home that has been….that has been…”Happy, happy, joy, joy” for the last few months. Darn it! There’s that stupid song! Where did that come from? Crap, now how long is it going to take me to get that back into it’s small little corner of my brain to hibernate for another decade or so? (My apologies now to any of you who also have this song hidden somewhere deep in your memory. You now are experiencing the pain of this redundant song right along with me). If you haven’t had the pleasure of hearing this song, I invite you to google it. But, be warned, it will hide somewhere until it can find a way out for the Rest. Of. Your. Life!

My first blog entry was written only a week into this “wonderful” summer vacation. I didn’t know what to really expect of July and August. Now, I know. It was more of the same and it just escalated the more time they were out of the routine of school. On August 23rd it all came to a head (an ugly, mean and sad monster of a head). Because I don’t want this entry to take up a terrabyte of space, allow me to list a few of the struggles that my kids have as a result of their birth history. This is not a laundry list of complaints. They are, however, the facts of their young lives.

Allison (10 years old, 4th grade)

  • born drug addicted to cocaine, methadone, heroin and marijuana
  • born to a mother who drank gin when she couldn’t get any drugs and prostituted herself for drug money
  • her biological father is HIV+ and has AIDS (praise God this was not passed onto Allison or her mother)
  • has been in Early Intervention/special education since she was born
  • diagnosed with Fetal Alcohol Spectrum Disorder and as a result struggles with: developmental difficulties, stealing, understanding consequences, understanding empathy, food hoarding, making friends, keeping friends, academics, impulse control, recognizing danger and a load of other issues that we are still finding out about daily.

Nathan (8 years old, 3rd grade)

  • born drug addicted to cocaine, heroin and marijuana
  • born to a mother who was incarcerated for accessory to murder when we first met her (anger issues?)
  • born at 28 weeks weighing 2 pounds 8 ounces
  • has been in Early Intervention/special education since he was born

I will get to making a list of their many awesome and sweet traits at another time (there are MANY) but this entry is about what happened on August 23rd and the blessings of my children were nowhere in my peripheral vision that sad day.

Prior to this day, there had been a build up of a whole summer of finding food stashed behind furniture, incessant fighting, lying, story telling, tattling and constant disobeying. This day was the culmination of all these things.

Nathan was in the midst of writing 25 times “I will stop telling lies because it hurts those I love.” He had been working on this for FOUR days. I finally told him he had to sit at the dining room table until it was finished. No getting up. No breaks. No nothing until it was complete. This writing assignment was a result of weeks of lying and lying and me taking a compassionate approach using the Bible to do devotions about lying and praying for God’s strength to stop lying. Crap, I’m not telling the whole truth (AKA lying). I did do those things but I also yelled, badgered, embarrassed and belittled him every time he told yet another lie. I needed to pray and ask God to forgive me for not relying on Him to help me get through to my young son. My patience and wherewithal was wearing very thin. I had a flashback to my days of having toddlers and trying to keep them in their timeout seat. All the advice I sought told me to just calmly walk them back to their seat without saying a word. Well, I was calm as I did this…the first 20 times! Then I got a little more forceful. Then I yelled. Then I cried. Then I sobbed because my young son got out of the chair for the umpteenth time and came to the kitchen and said, “Heather, I’m not doing this assignment. You can’t make me!” Needless to say, my first response was shock that he called me Heather. But then a rage rose to the surface like a volcano about to explode vicious and unrelenting molten lava towards anyone in close proximity. Thankfully, I was able to hold the rage back. I said to him, “Heather? Where do you get off calling me by my first name?” Little did I know that there was an equally dangerous volcano raging inside my sweet boy. A volcano that could not be held back from spewing out hurtful words. Over the course of the next minute or so I sat there dumbfounded by the words coming out of my son’s mouth. He was calling me Heather because I was not his mom. I was not his mom because I don’t treat him like a son. I don’t love him. I never should have adopted him. He doesn’t belong in our family. And a slew of other things that by this time I couldn’t hear because my rage was filling my ears and I was about to explode. I did explode but in a way that I wasn’t expecting…extreme sorrow.

I bolted down the hallway to my room and locked myself in and sobbed. For those that know me, I don’t do that. I don’t cry. I seriously don’t cry. My tear ducts dried up over 20 years ago and have never shed another tear. I get the emotions but I stifle them because it physically hurts to cry. Close your eyes and remember a time when you needed to cry but couldn’t because it was neither the time nor the place. You feel that build up of pressure behind your eyes as you hold back the tears until you can let them loose somewhere else when you’re alone. A stray tear may eek its way out only to be brushed away before anyone sees it. Now imagine that build up happening the entire time you’re crying with no tears falling. No release. No rush of relief. Only pain to the point where you just need to close your eyes for a few hours to protect them from the barrage of light streaming in a window. That is what I felt for hours on that Thursday. I stayed in there all day (only coming out periodically to check and see that my daughter wasn’t burning down the house). I didn’t care how much TV they watched that day as long as it kept them in one place and out of trouble.

As I laid in bed heaving and crying out to an empty room I could hear notes being slipped under my door. “Mommy, are you ok? Please come talk to me when you are done praying. Love -Alli” Thank the Lord, she thought I was praying! I was praying but I was questioning why God trusted me with these two children if He knew I was going to screw it all up. I was yelling at God for trusting me because I felt like such a failure! I was racking my brain trying to figure out how I messed Nathan up to the point where he felt he didn’t belong to our family. What had I done, said or implied to make him feel like that? My despair from this day lasted for a couple of weeks. I’m still going through some of it and trying to work out how I feel and how I’m going to handle all these emotions. One thing that kept coming to mind that day was a post I saw on Facebook (located at the end of this entry) a few days prior to my “meltdown.” In the midst of my sorrow and doubt was the image of these words coming to my mind. I knew, deep down in the recesses of my broken heart that day, that God was still there. God was loving me through my failures and my brokenness. He would lift me up out of this miry pit I was in and set my feet on solid ground again. I just couldn’t feel anything at that moment. I knew it but I didn’t feel it. Thankfully we have a God who is unrelenting in His love for us. For now, His love is all I know I can rely on. His love will get me through until I can do more than just sob. His love will fulfill my children as I figure out how to love them the way He wants me to. His love will endure forever and forever.