The Countdown is on

70 days!  Barring any setbacks, that's how many days are left before John says goodbye to his trach, hopefully for good.  Today we saw the Pulmonologist.  We discussed with her the ENT's time table for decanulation (fancy word for taking that dang thing out of his neck).  She was completely on board.  It's kind of funny because I have always sensed a sort of power struggle between our ENT and our Pulmonologist, but when it came right down to it, they agreed.  That's a nice feeling as a parent.  So the official date is April 7.  The time table looks like this:

April 1 (no joke) John will go to TCH for an outpatient procedure called a DL&B.  This is just a check of his airway.  We do this annually anyway, just to make sure that no granuloma tissue has formed in his airway that needs to be removed.  He will come home that day.

April 6 (day after Easter) John will be admitted to TCH for a minimum of 2 nights.  That night, they will put a cap on his trach and monitor him while he sleeps.  This is the same cap that he has been wearing during the day for a little while now.  It doesn't allow him to breath through his trach at all.  He has to breath completely through his mouth or nose.  We aren't allowed to let him sleep with it at home, so he only wears it during waking hours.

April 7 (DC Day) If all goes well after the first night, they will take the trach out.  The stoma (hole in his neck) will be bandaged.  He will stay in the hospital one more night so they can monitor his sleep without the trach.

April 8 (1st day post trach) If all goes well after the 2nd night, John will be discharged to come home.  And that is when the real fun begins.

This all started about 6 months ago.  On July 22, John went in for his 16th overall sleep study.  Let that number sink in for a minute.  in 9 years of life, he has had his sleep studied 16 times.  And it's not like he just goes in and goes to sleep and they watch him.  If you saw the amount of junk that they put on his head and body, you would be amazed that he's able to sleep at all.  When he was really little, it was a nightmare.  He screamed bloody murder the entire time they were attaching all of the electrodes and by the time they were done, he had himself so worked up he couldn't breathe.  Now, he doesn't cry but keeping him still long enough for them to get it all on is pretty tough.  They usually end up attaching each electrode at least twice after it's all said and done.  The other hard part is that I don't sleep well when I'm there.  So it's just a pretty miserable night all together.

photo from the July 22 sleep study

On July 29, (ironically 9 years and 1 day after his trach was inserted) we saw the pulmonologist for the results.  For some reason, I guess he just had a feeling, Tommy decided to go with me to this appointment.  He used to go to all of them, but after a while, nothing new was going on so he just let me take him myself.  But this time, he came with me.  Dr. K walked in and had already looked at the study.  The results really weren't what we were expecting.  You see, the two previous studies showed that while his apnea was significantly decreased, he was now having trouble expelling enough Carbon Dioxide at night.  He just wasn't taking deep enough breaths to blow it off.  So we continued with the ventilation at night to help him get rid of the CO2.  This sleep study, however, showed that his CO2 levels were in the normal range, but his apnea was higher than it had been.  We were just puzzled.  I thought to myself, this is never going to end.  But then Dr. K said something that surprised me.  She said she thinks it's time we see if taking the trach out will make a difference.  Apparently, he still has a significant amount of obstructive apnea and we think that is caused by the trach itself.  So if we remove the trach, the obstructive apnea should go away.  Also, obstructive apnea can also caused increased central apnea, which is when the brain just doesn't tell you to breathe.  So by eliminating the obstructive, we should be able to reduce the central.  We made a plan that we would get him through cold and flu season keeping the status quo, and then sometime in the spring we would try decanulation.  When this was decided in July, spring seemed like such a long time away.  But here it is.  February will be here in a few days and before we know it, it will be April.  In just a little over 2 months, our world will change.  And I am feeling so many emotions about it.

I'm excited because after nearly 10 years, my boy will be able to leave a more normal life.  Life with a trach is hard.  It goes beyond the realm of having a child with special needs.  It means he cannot be near water unattended, and his head can never go underwater.  That makes bath time especially tough.  It means he is more susceptible to germs because he doesn't have a mouth and nose to filter out many of the bad things in the air.  It means we can't just call the teenage girl next door to babysit.  We have to hire someone and spend hours training them on things like suctioning and how to know if the trach comes out and how to put a trach back in if it does come out.  They can't be left alone with him until they have sufficiently demonstrated they can do those things without me having to tell them.  So after nearly 10 years, we will finally have a little bit more freedom in things we haven't had before.

I'm anxious because although this will make our day time routine much easier and will improve his quality of life, it will mean that we will no longer be able to have night time nursing.  For nearly 10 years we have had a person in our house at night watching our son.  And one of those nurses has been with us since the very beginning.  Once the trach comes out, our insurance will no longer pay for us to keep the nurses.  This means I will be spending a lot of nights watching John.  We will set up some kind of system where I will sleep in the room with him, but that usually equates to not a lot of sleep for me.  I don't know how long that period of time will last.  So I'm anxious, and I'm sleepy already just thinking about it.

I'm nervous because I know this isn't a done deal.  There are a lot of unknowns.  This is not a slam dunk.  If his apnea doesn't improve, it means he will not get a good night's sleep.  His brain does what it's supposed to do by waking him up if he doesn't breathe.  But this means that his quality of sleep will suffer.  He will be more tired and that will affect his behavior, his school and his development.  And prolonged periods of time without good quality sleep can cause organs to begin to fail.  So I'm nervous that his quality of sleep will suffer, and my happy, healthy boy will no be as happy or as healthy anymore.

I'm afraid because if this doesn't work like we hope, he may have to have the trach put back in.  I've always prayed that when the time came for him to have his trach out, it would be a no brainer.  I wanted there to be no doubt that he would be okay without it.  But that's not the case.  This is kind of a trail and error situation, so there is a possibility that he doesn't tolerate it.  And I really don't want to go through the process again of having a trach inserted.  That was the worst week of our life because he had to be completely still and sedated in order to let the track heal.  I couldn't hold him or even touch him and he did not look like himself.  I don't want to go through that again.  So I'm afraid because I don't know what the future holds.

I'm blessed because although I don't know what the future holds, I do know who holds my future.  Our faith has kept us going all of these years.  Tons and tons of prayers have gone up on our behalf and we have received tremendous support from our family, friends and church family.  It is very powerful to know all of those people have been praying for us all of these years.  We have been blessed beyond our wildest dreams in this regard.  But mostly, I'm blessed because I know that it's all in God's hands.  He has had this mapped out from day one and nothing that has happened or that will happen will be a surprise to him.  We may not understand it, but he does, and knowing that he is in control means knowing that even if it's not okay, it will be okay.  He will lead us through the difficult times like he always has.  I hold on to the knowledge that one day, we will be with him in heaven, and my little boy will be made whole.  No more trach, no more wheelchair, no more diapers and no more lack of communication.  He will be walking and talking and doing all of the things he was unable to do on this earth, and that is the greatest hope of all.

You have all been so faithful to pray for us over the years, so I'm going to solicit your prayers once again.  Pray for John over the next 70 days that he will have no illnesses or set backs that will prevent this from happening.  Pray for him that once the trach comes out, his body will respond accordingly and this will be the end for good.  Pray for Tommy and I as we deal with the uncertainty.  Our whole lives and schedules will change completely, so pray that we will handle it well.  And pray that after our nursing days are over, I will find some way to stay rested.  I've been though periods of time with little sleep and it just affects me in ways you can't imagine.  So please pray for easy nights once we get him home and settled in.

Thank you all so much for staying with us on this journey.  It has been a wild ride, but we wouldn't be near as sane as we are without all of your love and support.  And I ask one more thing of you.  Share our story.  If you meet someone in a situation that is similar to ours, share our story with them.  Even feel free to have them contact me.  It can be a lonely world when you are struggling with the health of a child.  Having someone to share those struggles with, to seek advice from, or even just someone to talk to who you know understands can make all of the difference in the world. 

I look forward to the updates in the weeks and months ahead.

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.  

Time heals all wounds

Now that we are a couple of months into the school year and have had our first grading period, I thought it was time to update you guys on what's going on.  When I last left you, the classes had just been divided into two and they were waiting to hire a new teacher for the second class.

They have since hired a new teacher, although I don't know anything about her.  But John seems to have settled in quite nicely with his original teacher.  We had his ARD a couple of weeks ago, and a lot of good things were said and discussed.  I feel like we have a good plan in place and hopefully I will start to see lots of good things over the next few months.

Now you all know how much I didn't want John to change schools.  I was really upset about it and had my doubts.  Especially after the first couple of weeks, I still had my doubts.  But I kept saying that I was praying that God had great things in store for John.

Guess what.  It turns out that just maybe, I was the person God was trying to change through this.  Maybe it's me that he has big plans for.  I had an experience today, that I'll tell you about in a minute, that has led me to this conclusion.  I am not a natural born leader.  I do not have the "take charge" instinct that some people, like my husband, has.  I would rather sit back and let someone else lead, and then just do what I'm asked to do.  I'm really good at taking instructions and going with it, although my mother would probably disagree.  But that is just my personality.  However, thinking back on the events of the last several months I've realized a few things.

When I was told that he was being rezoned to a new school, that just awakened something in me that I didn't know existed.  I am not a confrontational person at all, and because of that I tend to let people get their way and kind of take advantage of me.  Well not this time.  I took the situation head on from the beginning, and really was fairly calm about it.  But that was only the beginning.  After the school year started and I felt things weren't going quite the way they should be, I didn't just sit back and let it happen like I might have in the past.  I first emailed the principal, and when I didn't get the response I liked, I contacted someone at the district.  None of that is typical of me.  But we all know that moms will do a lot when it comes to taking care of their kids.

And what did being so vocal about it get me?  I guess since the teachers and school knew that I was very involved in my child's education, they thought I would be the perfect parent to be in charge of starting a Special Buddies program at our school.  Being a new school, I didn't know if or when we would be able to start the program.  But once our counselor got wind of it and began asking around, I was the person who was recommended to do so.  This goes back to not being a leader.  I don't normally like to be in charge of things.  I will help out with whatever I'm asked to, but I don't like to organize and be in charge.  Which brings me to what happened today.

I agreed to be the parent liason for the Special Buddies at the school and Mrs. Leung (the counselor) and I set a date and chose an activity for our first event.  But there were still a few things I was unsure about.  So today I went to meet with Mrs. Leung to ask some questions and get a better idea of what to expect.  We had a great meetings and I got a lot of questions answered.  We discussed what we wanted to do at our first event and how we wanted to put it together.  And then I started to feel excited.  This was kind of unexpected.  I had been feeling dread and anxiety over having to come up with something fun for the kids.  I'm not a creative person so it is hard for me to come up with good ideas.  But as we were talking this morning and things were starting to come together, I actually started to get excited about it.  It makes me happy when John gets to interact with regular ed kids.  It's so important to me that not only does he get that interaction, but that the other kids get to interact with him.  I want kids to learn that not everyone is the same, but that they all matter just as much.  Hopefully if we can train our kids to think this way, we can get a handle on this bullying problem that is out there.

And if coordinating Special Buddies isn't enough, I volunteered to help start a Young Athlete's program at his school.  This is sort of an extension of the Special Olympics program and John got to take part in it last year at OKE.  It was a very fun day for the kids and parents, and then after, they had a parade around the school for the participants where all of the students and staff in the school lined the halls and cheered for our kids as they walked by.  That was my favorite part and made me want to get this started at Shafer as well.  We are probably going to wait until next school year to implement this program, but Mrs. Leung said she is going to go to OKE's program this year to get a good idea of how it works.  I told her I would go with her and help her bring the program to our school. 

This morning was the first time that I really felt happy about him being in school at Shafer Elementary.  I finally feel my heart begin to heal, because it truly was broken when he had to change schools.  I finally see that maybe God put us in this situation not for John's sake, but for mine.  He has forced me to come out of my comfort zone, and as a result, I feel like I'm growing as a person.  I don't think this means I'm going to seek out a leadership role or automatically become better at confrontation, but at least now I know that I have it in me if I need it.  I think he still has great things planned for John, but I have discovered that he still has great things planned for me.  And I am very hankful for him teaching me this.  It turns out, all I needed was a little push, and my heart just needed a little time.

Appeal....denied

Tonight, Tommy and I went before the Katy ISD school board to plead our case as to why we feel John should be allowed to remain a student at Kilpatrick Elementary. This really has been a long process. In case I haven't told you already, let me go back to the beginning. In mid April, John and I were on our way home from his hippo therapy evaluation when my cell phone rang. I was elated that the evaluation had gone well and that he was going to be able to ride this summer. I was feeling like things were finally falling into place for John and that he was finally getting just what he needs to become the person he is capable of being. I recognized the number on the caller ID as being a Katy ISD number, but I knew it wasn't from his school. The lady on the other end told me her name and that she worked with the Katy ISD special education department. She told me that because of the recent growth in Katy, and because of the 3 new elementary schools being opened, the district had decided to move John along with a small group of other life skills students at Kilpatrick, to the life skills program at Elementary #33, Schafer Elementary. I have known for a while this was a possibility because our neighborhood was being rezoned. But when I got that call, my heart sank. I asked the lady if there was anything I could do to change that decision and she informed me that I could file for an intradistrict transfer from Schafer to Kilpatrick. So that is what I did. The process of this is to fill out on online application. Once that was submitted, I then had to pay a $35 fee for the application to even be considered. Then I was told I would hear within 10 business days whether my application was accepted or denied. Talking with many people, I discovered that the office that handles these requests automatically denies all requests that are not from a district employee wanting to move a child to a school closer to where they work. So as expected, I received an email denying my request. I immediately requested to appeal the decision, and was given a date to meet with a district committee to explain to them why I think John should be allowed to remain at Kilpatrick. On May 10, I met with this 4 person committee. I had taken time to write down some talking points so that I could made sure all of my concerns were expressed. I even had a letter signed by John's pediatrician stating that John needed to be in an environment that had a registered nurse on staff to ensure that his medical needs were being met. I wasn't sure at the time, but later I found out that the new school was hiring a Licensed Vocation Nurse for their campus. While, I have nothing against LVN's and there are many out there that are wonderful nurses, I felt that the nurse who is at Kilpatrick is trained in trach care and has years of clinical experience in dealing with kids like John. She had to reinsert his trach tube 3 times this school year after it came dislodged at school. So I knew that he was in more than capable hands with her. I was not and still am not sure what kind of training the nurse at Schafer will have in dealing with kids like John. I felt like the meeting had gone well and was hopeful for a good outcome. A few days later I received an email with the committee's decision. My appeal had been denied. The reason cited was that they felt his needs would be met at Schafer Elementary. To me, that is not a good reason, and considering the fact they have never met my son, how do they really know what his needs are. I knew that we had one more option, appeal to the the school board. Tommy and I discussed whether this was the course we really wanted to take. After a little time deliberating, we decided that it was worth the effort if it would give us the opportunity to have John remain at Kilpatrick. I submitted the appeal to the Superintendent's office and received an email giving us a date and time to go before the board. Last night, we stayed up until midnight, listing out the things we wanted to say and Tommy typed them up in a dialogue format so that he could read them to the board. And today, at 5:30, we got the opportunity to express these concerns to the board. We decided to take John with us so the members of the board could see his face, and hopefully it would help them to think of him as a person and not just a number in the system. We also had Caitlin go with us so she could sit with him while we spoke. We were given 10 minutes to make our presentation then the representative from the administration was given 10 minutes to make his presentation. Members of the board then took turns asking questions of both sides to help them make a decision. We were told they would deliberate privately and then they would either vote on their decision during the open session that followed, or during next week's meeting. So Caitlin and I took John home so he could have dinner and Tommy stayed for the open session to see if they had a decision. He finally called me a few minutes after 7 and said that the board voted 5-2 to deny our appeal. So we had support from two of the board members, just not enough to have John remain at Kilpatrick. I have to be honest, although this decision was not a complete surprise, I was totally devastated by it. I was so in love with John's teacher this year, as well as the nurse at his school, and it completely breaks my heart to know that he will not be able to work with those people again. He learned so many things this year and I have seen a dramatic improvement in his listening skills, his communication skills and even his ability to follow simple commands. On top of that, he is actually learning things like his shapes and colors and even the letters in his name. His teacher found a way to get into his head and to understand him as well as to make him understand her, and I can't believe that he won't have her to learn from any more. Whoever the new teacher may be, no matter how good of a teacher she may be, it will take her some time to figure those things out, and it's not a guarantee that John will even be able to trust her enough to work for her. So instead of building on the things he learned this year and seeing where it can take him, he will be starting all over with a new team of people having to earn his trust. I fear that it will be a lost year and a huge setback for John's overall potential. It is truly shameful to me that the school district would put the business side of the district ahead of meeting student's needs. On top of that news, I also learned tonight that our nurse is not feeling well and would not be able to come in. The agency was unable to find a replacement for her tonight. So after little sleep last night, a full morning of Vacation Bible School, a dentist appointment this afternoon and then the board meeting, I will be getting little sleep again tonight. Tomorrow morning is another day of VBS and then John has an appointment with his ENT in the afternoon. And did I mention that Tommy is leaving tomorrow morning to go to Canada for the rest of the week? He was supposed to leave on Sunday, but stayed the extra day so he could attend the meeting with me. I will need lots of coffee just to get through the day tomorrow, and my emotional state will be very fragile for the rest of the week. My sweet husband did allow me to go to bed early and sleep for 3 hours or so while he was packing and getting ready for his trip. I will lay down on the couch and try to get a little more sleep tonight. Now is when I have to rely on God's strength more than ever. I need it every single day, but there are some days when I am reminded just how much I need it. I have been praying all along for his will to be done, so I choose to believe that he has bigger and better things planned for John. I cannot imagine in my wildest dreams that any school could be better than where he has been, but that is what God does. He goes beyond our wildest imaginations and provides us with more than we can dream of. I am so thankful for a God who loves me like that. Father, please give me strength and courage to face this change. God, you created John and you know his needs even better than I do. Give me peace of mind that you will provide all that John needs and that he will be okay. Use this situation to teach me to rely on you. Thank you for your reminder in Deutoronomy that says you will go before me, not to be afraid. You will never leave me or forsake me. Thank you for friends and family that pray for us every day. And thank you so much for the gift you gave us when you made us John's parents. We are so thankful to have a child that we can worry about and cry for when it seems that life is not fair. Mostly, God, thank you for showing your love for us each and every day. I know that I will be okay with a little time because I know you are still here, carrying me through and providing for me every step of the way.

Progress...Maybe?

It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going.  The first 3 nights were great.  He slept with no ventilator and no oxygen and did quite well.  But when Friday night came around, all of a sudden, he needed oxygen right away.  So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off.  Saturday night was much the same, except the oxygen was turned off at 4am.  So at this point I'm thinking, 3 steps forward and 2 steps back.

Sunday night came and we were able to get him to sleep without the oxygen.  So I thought we were making progress.  But in the morning, the nurse told me he turned the oxygen on from 1am to 4am.  DRATS!  I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does.  I'm just thinking maybe he's more tired and not taking deep enough breaths.

Monday and Tuesday were much the same.  He needed oxygen part of the night, but not all of the night.  By now it's really starting to bug me.  I guess all of these years with John has not given me much patience.  I want to see progress but I'm not doing so well to wait for it.

So last night, we put him to bed and it was the same thing.  His oxygen levels were below 92 and wouldn't come up without oxygen.  And even with the oxygen, they were only around 93 or 94.  None of it made any sense to me.  He should have higher oxygen sats with oxygen.  So I sat down in the chair in his room and began to tear up.  I'm just about at my breaking point and about ready to put him back on the ventilator.  I want my baby to sleep well and I want to make sure he's able to breathe well.  So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading.  We have been struggling with the pulse ox probe on his toe.  It's very tricky to get it in just the right spot to get a good reading.  But his thumb is smaller so it shouldn't be hard to get it on there right.  So we get it on his thumb, and low and behold his oxygen saturation is 98%.  AMAZING!  Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen.  The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head.  That would cause a problem with the signal picking up.  So again, my brilliant husband suggested that we put it on his second toe instead of his big toe.  It's smaller and we shouldn't have a problem getting it on.  So that is what we ended up doing.  And VOILA!  No oxygen was needed all night long.  He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.

So maybe the progress wasn't necessarily John's this time.  He has probably been doing just fine all along and we didn't know.  Maybe the progress was mine.  I am the one who needs to learn a little patience.  I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.

Emotions

Being a mom of a child with special needs is the most rewarding job I've ever done.  While it is so tough for me to watch him struggle to do basic things that I take for granted, it is also so exciting and full filling to watch him make progress with those same things.  I have never been so excited to get a high five from anyone in my life.

But while it is the most rewarding job I've ever done, it is also by far the hardest thing I've ever done.  It is exhausting both mentally and physically.  My child cannot walk, so he has to be lifted and carried from place to place.  This is taking a huge toll on my body.  In the past 6 years, it feels like I have aged twice that amount.  But I wouldn't trade having that sweet lovable boy for anything in the world.

This has been an emotional roller coaster for me.  While some parents of children with special needs know from day one that their child will never be typical, I did not.  I knew he was born early and he was small, but I thought with time he would grow and catch up with other kids his age.  And even for probably 2 years after he was born, I still felt that was a possibility.  But all of his disabilities began coming one at a time.  First it was the feeding, then the trach.  Next came his vision impairment and that was followed by his hearing impairment.  I finally began to realize that John will never be like other typical kids his age.  He is always going to struggle.  And with each diagnosis came a new set of tears.  I cried when we found out he was going to need a trach.  I cried when I found out his vision wasn't normal and I cried when I found out he would need hearing aids.  For those of you who have never seen me cry, it isn't pretty.  I'm not the type of person who can hide the tears.  As soon as I even think about crying, it is visible on my face. So you can imagine what I looked like to all of those doctors who had to give us the news.  If they would all just ignore me and leave me alone, the crying would stop sooner, but as soon as someone acknowledges in any way that I am crying, it just makes it worse.

When John was having private physical therapy twice a week, I had a lot of hope that he was going to keep getting stronger and would some day be able to do many of the things I hoped for him to do.  When the therapist talked to me and told me that therapy twice a week wasn't producing the results it should and that he should only come once a week, I cried.  Right in a waiting room full of people, I cried.  It just felt like she no longer had hope for him and that was one thing I couldn't afford to lose.  Then his OT told me that she thought he needed a break all together.  She had been working for 2 years on the same things and he just wasn't getting it.  She didn't think he was at a developmental age where he could understand what to do.  Again, it felt like she had lost hope and again I cried.  It became a joke that someone isn't an official doctor or caregiver of John until they have seen me cry.

I haven't had one of those emotional days in a while.  Things have been good and since John has been in school all day, he has made lots of progress.  I even have gotten him back into private OT and PT, which he will start this coming Monday.  But today, I had one of those days.

We had his annual ARD scheduled for today.  I know a lot of parents that dread these meetings because they can be long and drawn out.  For me it has never been something I have dreaded.  They have usually been easy and straight forward and I'm always pleased with the reports I get from the teachers and support staff.  So I had no reason to think today would be any different.  Everything was going along smoothly, just like always, and then the teacher dropped something on me I wasn't expecting.  You see, John spends most of his day in the special education classroom.  This is where they are most equipped to meet his educational needs and where he does his best learning.  But last year and so far this year, he has been going into the regular classroom to be with other kids his age, mainly for the beginning of the day and calendar time.  This is a time when they do musical learning and we all know how much John loves music.  He also goes with the 1st grade class when they go to Art and Music 2 or 3 times a week.  But the teacher recommended that he no longer go to his 1st grade class for the calendar time in the morning.  He will continue to go to music and art with them and will also participate in class parties and special events with them.  But because he really is unable to participate with the rest of the class, she felt that time would be better spent in the special education classroom working on his goals.

I have done a pretty good job of putting up this facade that I am such a strong person.  But when someone sees me cry, it just lets them see that I am not near as strong as I appear to be, and I don't know how to deal with that.

But like I said, I would not trade my son or all of the ups and downs we have had for anything.  He shows me that it's okay to struggle, as long as you are persistent and keep trying.  And when he wraps his arms around my neck and squeezes tight, it makes me smile, even if there are tears falling.