Thursday, April 25, 2013

Secrets of a Special Needs Mom

While browsing through Facebook this morning, like I do every morning, I came across this article that a friend had posted. It's written by Suzanne Perryman, who is a blogger for the Huffington Post. I have read posts like this before, but this one may be the most accurate in describing my feelings. I thought I would share the blog post with you first, and then I'll make my own comments on each point. Hopefully this gives you a little more insight into my life and my feelings.

6 Secrets Special Needs Moms Know But Won't Tell You

I am a special needs mom. And I have secrets. Things I don't talk about and other moms don't know -- or maybe they just forgot about along the way. Here are six of them.

1. Special needs moms are lonely. I yearn for more time with friends and family. I have an authentically positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy and have enough help. But I am lonely. Being a special needs mom doesn't leave me the time to nurture and maintain the relationships I really need. I could get super detailed here about the hands-on caring for my child. (Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus some.) The plus-some includes spreading my mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention. I don't have much time to call or email my friends and even family ... and if they don't call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I miss the days when I had playgroups with other moms, open-house style, dropping in and drinking coffee at a friend's kitchen table with my child playing nearby.

2. Special needs moms have to work extra hard to preserve their marriages. This work goes along with the high stress of special needs parenting and aims to combat the sky-high divorce rates for special needs families. I put extra pressure on my husband; he is my best friend, and sometimes I expect unrealistic BFF behavior from him at the end of the day (see no. 1). He is my hero: supportive, patient and loving -- and my kids would be totally lost without him. The success of our marriage will affect the health of our children. My husband and I haven't spent a night away from our kids for six years. We "date night" out of the house every few months, for a two-hour sushi date. Our marriage is a priority, so we "steal" our moments when we can.

3. Special needs moms are not easily offended. Despite what our social media status updates say, we are vulnerable, and life messes with us daily. So really, ask what you want to ask and it's OK to start with "I don't really know how to say this, how to ask you...." I am especially touched when someone cares enough to ask me how my child is feeling, or how to include my child in a social gathering, meal or other event, and am happy to collaborate on what will work for us.

4. Special needs moms worry about dying. We worry about our kids getting sick and dying; we worry about our husbands dying and leaving us alone; but most of all we worry a lot under the surface, and especially about being around to care for our children. We watch people we know grieve the loss of their children and try not to think about it. On the upside, we live life fully and don't take it for granted.

5. Special needs moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language "spoken" in every home.

6. Special needs moms know to savor the gift of a child saying "I love you." For the longest time I wasn't sure if my daughter Zoe would ever speak the words. When she was a newborn, it was her sighs of contentment as I held her against my breast that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her when I carried her in my arms. The first time Zoe found her words, she was already a little girl, and every time she spoke them I cried. She is 10 now, and her words are even more tender and wise. I leaned into her at bedtime the other night, and as her hand reached up, caressing my cheek, she whispered... "I love you Mom, for taking such good care of me."

1. Special needs moms are lonely. This may be the one point that describes me least. I wouldn't say I'm lonely. I am incredibly blessed to have an amazing group of friends that support me and are always there with a shoulder to cry on when needed. We have a great time together and that allows me to temporarily forget about the craziness that is my life. But the part that I can relate to is feeling like I neglect my husband a little, because I'm so busy taking care of the needs of my son. I'll get more into that in the next point. I also can relate to not staying in touch with family and friends. I sometimes rely on Facebook a little too much to know what's going on in my friends and family's lives. I don't pick up the phone and call nearly as much as I should, and before I know it, a great deal of time has elapsed since I last called. That makes me feel incredibly guilty.

2. Special needs moms have to work extra hard to preserve their marriages. This really hits home for me. Marriage is hard for all of us. If it were easy, there wouldn't be as high of a divorce rate as there is. And when you add a special needs child into the mix, the divorce rate is even higher. I have always been so thankful that God blessed me with an incredible man who is willing to stand by me through the tough times, and there have been some tough times. Not all men would have stuck around through everything we have been through. Not only do I put a lot of stress on myself, but he does as well, probably more than me. He takes his role as provider very seriously and I know the stress wears him down. Add to that my unrealistic expectations of attention, and it puts extra pressure on him. We don't have a lot of time for just us. We do have the occasional date night out, but they are a little harder to come by because we can't just call up the teenage girl across the street and ask her to babysit. We have limited options when it comes to someone who can care for John while we are out. That makes it harder to get away. We go out later than usual because we have to get John in bed before we can leave. Because he's on a ventilator at night, not just anyone can put him to bed. And if I'm being really honest, as much as I love the time with my husband, I am completely exhausted by the time we get home. We have been fortunate to be able to get away for the weekend a total of 4 times in nearly 8 years, and the first time wasn't until he was 6 years old. If it wasn't for my parents' willingness to keep John so we can have 2 nights alone, we wouldn't have been able to. But the thing is, when we do get those times alone, we are so exhausted from our everyday life, that it's hard to just enjoy each other's company. But he is my hero. He is a wonderful husband and father. He works hard to provide for our family so that I can concentrate on our son and his needs. He gives me nights out with my friends when I need one. He makes me feel safe and protected. I can't imagine going through this journey with anyone else by my side and I will work extra hard and do whatever it takes to make sure I always have him next to me.

3. Special needs moms are not easily offended. This is very true for me. I have encountered a lot of people who are afraid to ask me certain questions. I can tell they want to say something but they aren't sure if they should. I've even had the encounters in the elevator at the hospital where kids want to ask a question about John and the mom covers the kid's mouth. The truth is, I'd rather you ask. I want others to know that not everyone is the same. Kids especially need to understand that. If you want to know how something makes me feel, ask. If you want to know details about taking care of my son, ask. I will not be offended. The only time I get offended, is if someone tries to avoid me. And I am especially offended when someone acts like they feel so sorry for me because my son is not a typically developing child. Don't feel sorry for me. God gave him to me for a reason, and I like to think it's because he thinks I'm special enough to do this job. I am blessed beyond words for having him in my life, so there is nothing to feel sorry about.

4. Special needs moms worry about dying. Boy this is so true, especially having a heart defect. On days where I feel too tired to go on, I do it anyway for my son. I see it as my job to take care of him, and I worry all of the time what would happen if I wasn't here to do that. I even worry about getting sick or getting hurt to the extent that it limits my mobility. I have had small glimpses of what it would be like when I have had surgery or been in the hospital and not able to lift him or take care of him. Fortunately my mom was always able to step in and help. But I know she won't be able to do that forever. In my mind, no one can take care of him like I do. I just keep saying to myself that I can't die. I had gotten to the point where I was beginning to be scared to be alone with him in case something happened to my heart. I didn't want to have a heart attack or pass out and leave him here alone until whatever time Tommy came home from work. Since I got my defibrillator, I worry less about being alone with him, but I still worry about dying. The good thing about it is it forces me to take better care of myself. I go to all of my doctor's appointments when I'm supposed to and I usually listen to the advice they give. I need to be better about nutrition and exercise, but let's not get too crazy.

5. Special needs moms are fluent in the transforming body language of touch. Everyone has their own special love language. For some people giving and receiving gifts is their way of showing love. For others, it's doing small acts of kindness, like helping around the house or running errands. For me and for my son, it's physical touch. He is a very tactile person. His vision and hearing aren't normal, so he relies on what he can feel to know what's around him. He is always grabbing and touching. He gives hugs like nobody else, even though sometimes they turn into a headlock or choke hold. I don't know if this has always been my love language or if it's just been since I had him. All it takes with me is a touch on the shoulder, or the hand. An unexpected hug will go a long way with me.

6. Special needs moms know to savor the gift of a child saying "I love you." I get love from my son every day. He will probably never be able to actually say the words "I love you" or any words for that matter. But every morning when I lift him out of bed and carry him to the living room, he wraps his arms around my neck. When I'm getting him dressed and I sit him up to take his shirt off, he wraps his arms around my neck. This is often when that hug becomes a headlock, but I love it. He will look me in the eyes and then lean in and give me a wet, slobbery kiss on the cheek. He's getting heavier so lifting and carrying him is becoming harder and harder. But as long as I'm physically able, I will continue to do that. Because every time I have to carrying him someplace, I get a hug around the neck. That's how he says "I love you, mom." And every single time, it melts my heart.

Monday, April 15, 2013

Summer Therapy

Can you believe it's April and that this school year is almost over? I can't. It seems like it was just a few weeks ago that we were beginning an adventure at a new school, and I wasn't happy about it. But I must say that it has been a good year for John. His new teacher is very supportive and does a great job communicating and taking care of John's needs so that I don't have to worry while he's there. The nurse and nurse assistant have both proven to be quite competent at replacing John's trach, since it has come out several times at school this year. He is learning and making progress towards his goals and most importantly, he loves going to school. I've gotten involved with the Special Buddies program, which in turn makes me more engaged and committed to John's whole school experience. While I still would have liked for him to have stayed with last year's teacher and to see him build on what he accomplished last year, I am very pleased with how this year has turned out.

But with the end of the school year comes summer. Summer can be tough, keeping up with John all day. I try to plan activities, but there is only so much you can do in Houston that is indoors so that we don't die in the heat. I began planning our summer and realized our calendar has gotten quite crowded. June has Vacation Bible School and August has Super Place Camp, both of which will be held at Tallowood. But the busiest month, and maybe the most exciting will be July when John and I will be spending 3 weeks in Austin while he goes through TheraSuit Therapy.

I told you all about TheraSuit last year when John was supposed to participate in it here in Houston. But the only clinic in Houston who did this therapy, closed the month before he was supposed to start. I was very disappointed at the time, but now realize it was probably for the best. John started horse therapy last summer so if he would have done both, he would have been exhausted and maybe not even able to participate fully. But this summer, we are not going to do horse therapy since we are doing it throughout the school year. So we will be able to concentrate all of his energy towards the TheraSuit. If you want to know more about TheraSuit therapy and what is involved in it and how it can help John click here. If you follow the link, be sure to look at the pictures.

I started thinking on our way to Kinder at Easter that it would be nice for John to be able to participate. Our Austin friends have done this therapy at a clinic in Austin and have been telling us we should come there to do it. But because John requires night time nursing, I never thought it would be possible to stay away from home for that many nights. But as I thought more about it, I thought that it may be possible. We could stay in a hotel in Austin during the week and then come home on the weekends where we have our regular nurses. I even decided that if I have to, I will take care of him at night as well as during the day if that is the only way we could do it. I knew I'd be able to get some sleep on the weekends so I figured I could tough it out. But then it dawned on me that our nursing agency has an office in Austin and maybe, just maybe they could provide night time nurses for the nights we are there. After talking with our nurse manager, she thinks it's a possibility since we have a lot of advanced notice to line someone up. So the next step was to contact the clinic and see if they had any openings.

I got through to one of the Therasuit coordinators and she told me that they had two available spots, both in the afternoon. One was July 1-19 and the second was July 29-August 9. She told me she would send me an application and I needed to fill it out and return it so they could go over it and decide whether or not he would be accepted. It was a lengthy application that required a lot of health history. It took a couple of days for me to go over and complete it as accurately as possible. Once I sent it in, I just had to wait. Meanwhile, I knew that even if he was accepted, there was still the cost to consider. It's not a cheap therapy and I knew we would need help from insurance in order for John to participate.I know a lot of insurance companies don't pay anything towards this therapy and some only pay a portion. I was just hoping that ours would cover enough. After a week of waiting, I finally got the email I had been waiting for. John was accepted. And the best part, our insurance is picking up the cost of the entire therapy, with the exception of the daily co-pay. I knew there was a $500 deposit required for holding his spot and the total of the daily co-pays came out to almost exactly that. So it turns out, we won't be paying any more out of pocket than we already expected to pay.

It just feels like this is the exact right time for John to participate. I knew there would be a few obstacles to clear in order to make that happen. But as I got further into the process, God just cleared every one of those obstacles out of the way. We still have a few more things to do before we start in July, but they shouldn't be a problem. I am so excited for John to be able to do this. He may not like it at times because it's going to be hard, and he may even cry or pitch a fit. But I know in the long run, this is really going to be best for him. It's going to really strengthen the muscles that need it most as well as help with balance and coordination. I'm so excited to see the difference this could make in his motor skills.

I have just a couple of prayer requests for you to consider. First, pray that the nursing agency is able to find a suitable night time nurse to take care of John the 4 nights a week we will be there. It would be exponentially better for both of us, if we can both get a good night's sleep each night. Second, pray for John as he goes through the therapy. I know he's going to be exhausted each and every day. I know it's going to be hard and maybe at times uncomfortable. Just pray that he is physically able to tolerate the tough days. Third, pray that this will help us to see major improvements in John's strength and overall motor skills.

We don't have a specific genetic diagnosis that explains all of John's special needs. One reason we would like one is to be sure we are doing everything we can to ensure that John will be able to meet his full potential. With the addition of this therapy this summer, it finally feels like we are doing everything we can. With that being said, pray for us as we await the results of some recent genetic testing. All three of us had to submit blood work to be analyzed in hopes of discovering a diagnosis for John. Having a diagnosis will not change the way we treat him or love him, but like I said before, it may affect the things we do for him to help him reach his potential. And it will be nice just to have a name. Maybe we can meet others with the same diagnosis that we can lean on for support and advice.

Once again, I thank you all for being so faithful with your support and prayers. Without them, we wouldn't be near as put together as we are.

Monday, April 1, 2013

Easter 2013

Holidays are special for every family. Time spent with those we love, often times those we haven't seen in a while, is what makes it special. When you ask people what their favorite holiday is, often times you'll hear them say Christmas or Thanksgiving. But for me, in the last several years, Easter has become my favorite holiday. The most important part of Easter is remembering what Christ did for us on the cross. The sacrifice he made is the greatest gift we could ever be given. I also love Easter because of the newness of spring. All the old fades away, and new birth is beginning. The colors are pretty and the temperatures are usually perfect, with the exception of course of a few odd years where we had freezing rain. Also, it's a great time to gather with family, without the pressures of shopping for everyone.

I don't know exactly how long ago this tradition started, but several years ago, our family began gathering at my parents' house the weekend of Easter. The highlight of the weekend is boiling crawfish and shrimp on Saturday afternoon. We usually have a lot of extended family around on that day. My brother, Jimmie, my dad and Tommy usually man the crawfish pot while the rest of us fill eggs and hide them for the kids. We use loose change and candy to put inside the plastic eggs and the kids nearly kill themselves trying to find them all. Once we think they have all been found, we end up hiding the empty eggs again, just to keep them occupied. The toughest part of it is keeping the kids inside the house where they can't peek while we hide. Sunday brings us all together at church, where every year the Kinder Bible Church choir performs their Easter musical. The choir is led by my mom and my dad is a member as well. After church, we scurry home to finish putting together lunch, which is always one of dad's world famous roast. The type of roast is different all the time, but without fail, it is always delicious. Mom sets a beautiful table, and we all squeeze around it and enjoy each other's company along with the delicious food. But before everyone gets undressed, we take turns in front of the fireplace taking family pictures. There are pictures of the individual families, the grandkids together and then the whole group. It's usually a rush to get them all taken before someone has enough and goes to change.

This year was much the same, except we ended up not hiding the eggs. There were fewer people there this year and only a couple of kids. They were pretty occupied helping with the crawfish and playing in the yard, and the adults just didn't get around to it. But we still really enjoyed ourselves. The weather was perfect and we sat out on the patio all day, enjoying the sunshine and the conversations. It was very relaxing and I loved every minute of it. John enjoyed just being outside all day. He is an outdoorsy boy, so it was a treat for him to be able to sit outside all day without it being too hot or cold and without the sun beating down on us. Sunday, we went to church and the choir did a great job. We came home and took a few pictures, not as many as normal, and then we threw the rest of lunch together. And instead of setting a pretty table and squeezing around it, we decided to keep it as simple as possible. We served lunch on paper plates and then all went out to the outdoor kitchen and sat around the table in there. I kind of liked bucking tradition, but the most important thing was that we were all together. Jason couldn't make it home this year and we missed him.

We drove home in a pouring rainstorm yesterday. Tommy hates driving in the rain and I'm pretty sure that is the slowest he has ever driven between Kinder and Katy in his entire life. What typically takes us 3 hours, took us nearly 4. We were all miserable and couldn't wait to get out of the car. And our trip ended just like every other road trip. We pulled into the driveway and John started giggling. I guess he is so happy to get out of the car and not be strapped into a seat that he can't help but express his pure delight. This time he started getting excited as soon as we turned onto Fry Rd, 2.5 miles from our house.

Here are some of the pictures I took from the weekend.