World Record Attempt #1

I have said it before that being a special needs mom can be very isolating. I don’t have a group of girls that I can call up for a girl’s night out or a girl’s trip. My circle is pretty small. I have been planning this event for Skylar for about 7 months. I wanted to try to break the Guinness World Record for the Longest Line of Moving Wheelchairs. This was going to be an event to mark a big item of Skylar’s bucket list, raise money for charity and bring awareness for people with disabilities. I had planned most of it but had some help from a few pretty great people. I spent hours upon hours calling people, asking for vendors and sponsors, looking for volunteers, trying to promote the event. I was fortunate to have things work out really well. I had no idea about how many chairs I would have but in my gut I just knew we would break the current record. The day came and went and we did not break the record. I felt defeated and like I had lost. I put on a great face but I was disappointed and felt let down.

Skylar spent the day first in line waiting for us to see if we’d get enough chairs. She continued to have low oxygen levels on 3-5 liters of oxygen. She had a smile on her face though. We get home and on 5 liters of oxygen she is struggling. As I try to suction her and try to keep her oxygen levels up I reflect on the day. I think about Skylar and the life that she has lived and how hard she has fought her entire life. I think about how if life got to hard and she gave up she’d no longer be here. I also think about everyone that came today. Most of the people that came today use a wheelchair on a daily basis. I am not sure what it’s like to be in a wheelchair but I know what it’s like to care for someone who is and everything is harder.

It gives me the realization that today was not a defeat but a lesson. It showed me what to improve on for the next time and it really showed me how truly amazing people can be. I am beyond grateful for the people that came out to volunteer and donated their time, who donated t-shirts and other things and everyone who came out to participate. I’m thinking about today and I no longer think of defeat but just hunger to break the record and to spread awareness. I think about Skylar’s inability to give up and everyone there. I couldn’t imagine what their life would be like if they gave up when things got hard or felt defeated. It’s a humbling experience. If breaking a world record was easy I think there would be a lot more record holders.

Like I said, today is a lesson or trial run. I got to see what I need to improve on and how it can be better. It would be amazing if life worked out like that. If every time we messed up or made a mistake if it could be a trial run. At the end of the day, we had fun, was able to raise money for charity and feel like even though the record wasn’t broken I still feel like I accomplished something. I can’t wait to try again and truly break the record! The experience was amazing and I can’t imagine how it will feel actually breaking the record and getting to share that with even more people.

Two-way Mirror

We (special needs moms) say a lot that you truly have no idea what it’s like to have a special needs child until you are in our situation. Especially after having Sawyer. I worry about Sawyer but I worry more about him misbehaving in a store or restaurant or what his future looks like in the world we live in now. I want to make sure he grows up to be a good boy/man and has many amazing opportunities in his future. However, having Skylar is totally different. I am not a hysterical mom who freaks out over things and I usually stay calm in emergency situations but I worry about everything and I’m always thinking of what her current state could mean or what is causing it. I worry when she sleeps to much because that could mean something is going on, I worry when she’s having to be on oxygen all of the time, when she’s crying from pain but we can’t locate the source and especially about things happening that could be disease progression and I worry most of all about losing her. A parent to a typical child or healthy child would never pray for their child to need a 15th brain surgery because if they have surgery it means that what has been going on for a few weeks is fixable and can be explained. It’s the unexplained and the non fixable stuff that we fear because that just means that their health is declining even more. It means staying on top of everything because when things slip through the cracks it could have very negative effects and being their voice and their advocate as well as their protector. It seems like we always have to keep it together even though we are often right on the brink of losing it. It’s trying not to roll your eyes or give a parent a reality check when they are complaining about their children or when their child’s worst day is what you’d consider a good day for yours but you have to listen to them freak out and talk as if they can understand your struggle and trying to put into perspective that this is the worst they’ve had to deal with when it comes to their child. Even though I sympathize and truly care about their concern in my mind I keep saying you should feel blessed that this is the worst you’ve dealt with. It’s always keeping a suitcase packed because an ER trip usually turns into a couple days in the hospital. Usually we know our doctors well and have cell phone numbers for a lot of the nurses. You develop such good relationships that your child’s doctor is telling you to email her or text her how she’s doing so that we only have to come to clinic 3-4 times that month instead of 5.  It means watching your child suffer and fight and go through so much but get to witness so much determination and strength. You are blessed with the time that you have and cherish every moment but also fear for the future and your life without them. It’s crying in your pillow at night because the anxiety and emotions of the day just overwhelm you so much that you can no longer hold it together. It’s being part of a community that when someone’s child passes no matter whether you knew that child personally or just knew their story you mourn for that child and for that family because we all feel the loss. It’s watching friends say goodbye to their children and feeling helpless and wanting to help them so much but having no idea how to take some of the pain away. It’s having support and a group of people who truly get your struggles and losing most, if not all, of your other friends because they can’t understand. It’s sleeping on the floor in their room because they are having such a bad night that you want to be close if something happens in the middle of the night. It’s learning so much that you feel like you’ve gone to some of nursing school, med school, and pharmacy school and you can laugh when you had to educate residents on something medical. It’s spending hours upon hours waiting in clinics, ERs, hospital rooms and surgery waiting rooms that if totaled up would probably be weeks to maybe months of waiting. It’s adopting a new way of life and understanding more about handicap accessible everything then you ever thought you would. It’s mourning the life that you thought your child would have but celebrating the incredible life that you were given and making sure that they live their life to the fullest. It’s celebrating any achievements even if it was just holding their head off the mat for 20 seconds or following a command one out of 10 times. It means pushing them and pushing everyone around them so that they can reach their full potential or at least be able to say we tried. It’s knowing your child better than you do yourself and knowing what they need even though they are nonverbal and can’t tell you or knowing how to figure it out. It’s a new world of frustrations that you never thought of before like being angry at people parking illegally in a handicap spot or parking illegally so that you can’t get your child in your van. It’s wanting to give back and give more to organizations because they’ve helped your family so much and what little time you do have its spent volunteering. It’s sending your child to school or leaving them at school even though they are having a bad day because if you picked them up every time they had a bad day you’d hardly ever work. Your days off consists of doctor’s visits or hospital stays because you want to save your time for the unexpected moments that you might spend 2 months in the hospital or a frequent 4-5-day stay. You love to work and you have no choice but you are torn because wanting to succeed professionally but also wanting to be there for your child as much as you can. It’s the guilt that comes with missing work and having to take off so much for hospital stays and doctor’s visits and worry if your boss will get tired of having to deal with it. It’s a battle that you never wanted to be part of but you can’t stop fighting and give up because your child’s life depends on it and you will continue to fight until their fight is over. It’s caring for their every need and learning how to care for them medically with PICC lines, medical equipment and things that if you weren’t a parent you’d have to be a medical professional to be able to perform. It’s having a child and striving for normalcy and wanting their space to look like a little girl’s/boy’s room and not a modified hospital room and finding new ways to store the endless amount of supplies that you require monthly. This isn’t all typically for a lot of families with special needs children. It looks very similar to us who have complex medically fragile children. Our journeys are very similar and we can take comfort in each other because we know exactly what they are going through. I watched a good friend say goodbye to her daughter and I wasn’t trying to make it about me because my heart was breaking for her but inside I kept picturing what my future might look like and it is beyond words to describe the devastation I felt and the sadness. Being a parent to a special needs child especially a complex child is not for the faint of heart. Not every parent is equipped with the ability to do what we do on a daily basis. I use to get so frustrated when people would say that God only gives children like Skylar to moms that can handle it but as Skylar got older and as she’s required more care I can now agree with that statement. Not to discredit them as amazing parents but it’s a totally different world. It’s like your standing in front of a two-way mirror. You can see them and their family and you’d give anything to have your child be healthy and running around and not confined to a wheelchair and equipment and watch them experience a totally different life. However, while you are looking out they are not able to see in. They know that you’re there and you can tell them about your life and experiences but they truly can’t see it. So the statement that you could have no idea what we go through is not out of disrespect it’s just an honest statement because when you look in a two-way mirror you can only see your reflection and can only just imagine what we experience based on the stories that we share and even that is biased because as I said before we always try to keep it together.

Giving credit where credit is due

I know I write about this a lot, but this is a major part of my life and it’s hard not to. Special needs moms don’t get enough credit in my opinion. I don’t think anyone can fully understand what we as parents go through. I’ve never been to a day of nursing school, but I can perform a lot tasks that nurses go to school to learn and sometimes don’t even learn it until they graduate and get a job. In 11 years I have become a pro at a GJ or Gtube button, feeding pumps, catherization, seizures, medications, and many other things and now PICC lines. We as parents do not get formal training or any special training. Most of the time when something comes up we see a nurse or someone from a medical company and are given a brief demonstration and then sent home with tons of medical supplies and phones numbers if we have questions but are left to learning a lot of it on our own. Dreaming for a “normal” day would never be considered normal to a typical family with healthy children. This past hospital stay was a lot of firsts for us. In 11 years Skylar has never had to have a blood transfusion or had to be intubated for a period. I feel fortunate that she only had to be intubated for about a week. Although I knew what to expect when I got back into her room in the PICU, it still hits you like a ton of bricks and I just broke down. My biggest fear was that she’d not be able to breathe on her own and come off the vent. There have been conversations of a trach before but never to this extent and I just feared that she’d be on the vent for an extended period and they’d end up having to trach her to get her off it. She has a way of proving people wrong and showing them that she doesn’t like to play by the rules. Once they start talking about something she has a way of showing what she’s capable of. This was a different experience for me as a mom as well. When she’d go into the hospital in the past there was never a question of where I was going to be. I never left, and I had no desire to leave. However, this was the first time that I had another child to consider and we have not had a long hospital stay like this since Sawyer was born.  It rocked his world too. He is too young to understand why mom and sissy are not coming home and why he’s having to spend his nights at the hospital. Towards the end if was extremely difficult. The hospital was no longer a place he liked to come and play and see everyone it became a place that he dreaded. He’d leave each night without all of us as a family and he didn’t understand why. The first night I came home was the first night I had ever left her at the hospital all night long. I have left only 2-3 times to go to dinner or run home and get clothes but never all-night long. I know Skylar very well. I can have educated conversations with doctors and I more than understand her condition. I have heard many times that my knowledge as a mom is impressive and they assume I work in the medical field by the things that I know and the things I ask. I say that because I know Skylar and to leave her is scary for me because I know what questions to ask and how to tell when she’s in pain by looking at her heart rate. There are things that I know about her because I’m her mom and I’ve been around her and most people would never know to look for it or know about it because they don’t know her. I’ll admit when it comes to her I am a control freak. I’m sure if you ask my family they will say that I am a control freak about more than just her. However, that first night when I got home with Sawyer I cried on the way home and I really broke down when I got home. It felt empty and even though I knew she was at the hospital I had this feeling of this is what it would be like without her and it took my breath away.

It’s also hard to not only be a special needs mom but to try to work full time on top of that is extremely hard. Having a child with chronic medical issues is full time. I don’t like to say job, but it consumes your day. There are constant phone calls with doctors and doctor’s visits and you are trying to balance your work life with your personal life. You feel guilty for not being at work but not guilty enough to not take your child to the doctor. You send them to school when you’d give anything to keep them home because you want to be there for them when they are having bad days, but you know that you have 3-4 doctors’ appointments coming in the next few weeks, so you don’t feel like you can tell your boss that you’re staying home. Lately, I have had this pulling at my heart because my desire to want to work and be in an office has become less of what I want for my life. I love my job and I love the work, but I love my kids more. If I were to quite my job tomorrow and in 10 years Skylar was no longer here I’d never look back and say that I wish I would have worked more and spent less time with her, but I feel like in those 10 years I could look back and say I wish I would have spent more time with her rather than being at my job. That’s easier said than done though. I don’t have the luxury of quitting my job and just deciding I’m going to stay home.  I haven’t been able to find something to allow me to do that or allow me to work from home so, as of right now, that’s not God’s plan for my life. Regardless of whatever field you work in, you’ll never have a boss that understands what it’s like unless they have walked in the same shoes as you.

Some things that people also don’t understand is that as a special needs mom you miss out on a lot and it’s lonely. We’ve cancelled plans and trips and many things due to hospital stays or just not feeling well or having a temperature too low. Your plans are always in pencil because you truly never know what kind of day they might have when you wake up one morning and just because their morning started out amazing doesn’t mean it will end that way. You have a lot of people that care and love you and your family, but close friendships are hard. They truly don’t’ understand your life and how complicated it is. I have friends and people that really care about my family and care about me, but I’ve had girl’s nights with my church group, but I truly don’t have a group of girl friends that I can call up to go do things with. I have spent most of my adult life focused on my child and that didn’t leave much for friends and time for myself. There is a lot of support and families like to get together and talk about issues and things going on in our life and it’s amazing. I love those times and I love being able to share those moments with people that understand. One thing that I told Hospice when Skylar was it was there are a lot of support groups for parents who have lost children but there is not one for parents with terminal children. I never want to spend my days focusing on the negative but sometimes it would nice to reach out to family and say I’m having a really hard day and they know exactly why and what I’m going through.

I do commend special needs parents and what they go through and what they must learn and teach themselves. It is certainly not easy. It’s like owning a care. I know the basics of how to keep my car running. I know to change the oil and put gas it in but when something goes wrong I have no clue. Parents of healthy children are checking for oil changes and if they need gas, but parents of special needs children are having to know what it all means when the car breaks down, what to look for when things start to go wrong and doing everything we know how to keep the car running as smoothly as possible. It’s way beyond oil changes and gas it’s checking under the hood and checking all aspects of the car 24/7 and the slightest glitch can set so many things off. So, mommas I see you and I’m so thankful that you chose to be the mom that you are the dad that you are and chose to give these kids an amazing life. They truly deserve everything the world has to offer and not everyone is willing to do what is necessary to ensure that happens. 

A Day in the Life

I get asked or told often, “I don’t know how you do it” referring to taking care of Skylar and dealing with everything that she goes through. The truth is I’ve never thought about “how I do it” because I just do. For my household, it’s our normal. Doctor’s offices, ER visits, OR waiting rooms, oxygen machines, suction machines, and a mini hospital in our house with all of the other equipment and supplies that we have is just how we do life. Is it hard? Absolutely! Throughout the years, I have been able to really contain my worry until it’s necessary. I get concerned of course but not that gut wrenching, can’t eat, feel nauseated type of worry that comes when you know something is not right.

Having a child with special needs is a journey that nobody could possibly understand until they can actually experience it from themselves. I work a full time job and it’s a struggle. Skylar goes to school and she has some amazing people that care for her and that truly love her so I know that she is well taken care of but having to balance it is hard. Making decisions about when to pick her up to go to the ER because you know that she needs to go but you’ve also missed so much work that you’re trying to leave as close to end of the day as possible but also keeping in mind that you are about to spend 4-5 hours in the ER at least and you don’t want to get home at midnight. You have this overwhelming sense of guilt because as her mom I want to be there when she’s upset or having a bad day but it’s not always possible. I want to stay home and be the one to care for her when she’s struggling but not working has never been an option for our family. Instead I put her on the bus and pray for her and the ones that are with her during the day and hope that she doesn’t have many issues. There isn’t a day that goes by that I am not texting her nurse about something, calling a doctor, making appointments, talking to supply companies or something to do with her or her care. For parents that have children, you understand what it’s like to be caregiver to someone and you know what it’s like to have a baby and have them be fully dependent on every need that they have. You also know what it’s like for them to become independent and be able to do things on their own and as they grow and get older the more they do for themselves until they are completely self-sufficient. For those that have never been a caregiver before will never understand what it’s like caring for someone for every need that they have and knowing that it will never change. Having Skylar has been one of my biggest blessings in my life. She has taught me so many things and I am proud to be her mom and I would love nothing more than to spend the next 40 years caring for her every need. I love being her mom and caring for her so I don’t want it come off as if I don’t but it’s hard. There are no days off and even in her best days we have a routine of respiratory care and feeding, inhalers, medicine, and more. I say this not to complain but to shed some awareness on what parents of special needs children deal with. Yes, I understand the worry that parents go through with typical children and I know that as parents we’re going to worry about our child. Having a typical child as well, I can understand the worry that parents go through but they truly have no idea. I don’t worry half as much about Sawyer as I do Skylar. He’s a healthy boy and I might wait a little longer than I should sometimes to go to the doctor because I don’t have that sense of urgency when he’s sick because I know he will be okay. Obviously, if something was wrong it would be a different story and I would worry about him like I do Skylar but I don’t treat him like a fragile child.

You also have those that will say that they aren’t sure why people pay so much attention to our children because nobody’s time is known. While that is true, you have no idea what it’s like as a parent to deal with a medically fragile child who has a limited life expectancy. You dream of your children graduating high school and going to college, getting married and having children of their own and I just hope that my child makes it to her next birthday. Almost every day I am having to do something to help her to make sure something more serious doesn’t happen. Like keeping her warm so her temperature doesn’t drop to low 90s and her heart rate doesn’t go below 30s and making sure she has oxygen and suction so she can breathe.

Living the life of a special needs parent isn’t glamorous and it’s not for everyone. It takes some really strong men and women to go through the things that we do day in and day out.  Skylar is a medically fragile child and I am fully aware that there are children that are much worse than her. She has been through a lot but I know it can always be worse and I thank God for our many blessings and every day that she’s here. I commend parents of special needs children and what they go through on a daily basis and how much they love their children and how much they do for them. We all want our children to be healthy, have “normal” lives, be treated like any other child, enjoy the same experiences as any other child and have the best quality of life that any parent could ask for. If I had one wish it would before Skylar to be able to experience life as any other child. No wheelchair, no feeding tube, no oxygen, or any disability and illnesses and to be able to run and play and eat pizza and ice cream and live life like every other child. One day she will but just not on here on this Earth.

Unanswered Prayers

The song Unanswered Prayers has been my anthem for YEARS!

“Sometimes I thank God for unanswered prayers. Remember when you're talkin' to the man upstairs

That just because he doesn't answer doesn't mean he don't care. Some of God's greatest gifts are unanswered prayers”

I thought I knew what I wanted in my life and I had no idea that what God had planned for me would be so much better. When I became a mom to Skylar I was not ready. I didn’t want kids at this point in my life and I certainly didn’t want to be forced as a single mom but I had no choice. It took me a long time to understand why it happened to me and why I ended up being a mom to such a severely disabled child. I didn’t understand but I couldn’t imagine my life any different or any better than it has been with her in it. I am opinionated and stubborn but I work really hard. I finished my Bachelor’s Degree being a single mom and I ended up having to pay my own way because when Skylar was a baby she was in the hospital for 6-7 weeks and that was the first time I was told that she wasn’t going to make it. I would hear that a few times since then but despite me explaining my situation to my teachers they all failed me anyway so I had to beg to even stay in school but I finished. I work really hard and I have always tried to do the best that I can do in anything. I am competitive and I like to be good at what I am doing no matter what it is. I am opinionated and I have to fight not to freely give my opinion because I have learned that bridges get burned in your personal and professional life the more open you are. I am sensitive. Too sensitive at times. There are people that I am around every day that doesn’t like me and I have no idea why. I wish I could be one of those that doesn’t care but I never will be. I will never understand why no matter how hard you work you still get overlooked. Prior to Clint, I thought I knew what I wanted. I was determined that I would never have kids and I was content with it just being the two of us. I hadn’t found that love from another person that made me feel like a future was possible. I prayed that I would find a man that would love me and love Skylar and I will admit I got impatient. I honestly didn’t think that I would get married or ever find someone that would accept my situation and want to be part of it. God knew that at the right time I would meet a man who would be exactly what I needed. I met Clint when Skylar was first put into Palliative Care and then in hospice. My life changed. There was hope for a future and this guy wanted to be in my life. I talked to him numerous times to make sure that this is what he wanted. I think that if God had answered my prayers years ago I would still be unhappy and with people that didn’t value me and could care less about Skylar or completely alone and having to deal with Skylar and everything that we’ve gone through alone. I am thankful that my life has turned out the way that is has and I have never been happier. I am married to the most incredible man and Skylar will actually get to meet her brother and I never thought that we’d get see that day. I wanted nothing more than for her to know her sibling and them to know her and understand why children like her are so important in our lives. I think you learn so much from children like her and I wanted them to see it firsthand rather than by stories that I tell him. This past year has been a rollercoaster. I went from almost losing my child to having Skylar doing amazingly well. It’s amazing to see her come from having a few weeks left at the most to being discharged from Hospice. There’s not that cloud hanging over our head that the potential of death isn’t around the corner. However, we still face challenges and only God knows how much time that Skylar has with us because I am thankful that she’s where is she right now. She is loving life and we are still enjoying every day. My perspective on how I want to live my life and help her live hers has changed. I want to give her everything I can and continue to give her the best life that I possibly can. In 9 years I have heard that she wasn’t going to make it 3-4 times and for the first time last year they put a time clock on it. I know what hospice is and I know that one day she could not be with me anymore but there is nothing more shocking then having a doctor tell you how much time you can expect with your loved one. That’s more than heartbreaking. It took my breath away to think that in a month the person that I have loved more than life might not be here. Thankfully God had other plans for her. Even the doctors were amazed and how well she was doing because she came out of surgery and he again prepared me for the worst because he said that the surgery didn’t do much at all. It wasn’t going to help her. She’s truly a fighter and it’s certainly not the first time that something has happened with her that nobody could explain. My life has never been so content. My personal life almost seems too amazing. I feel like I got my fairytale. In two years or less I will have completed my Graduate Degree and who knows what God will have planned for me then but I can’t wait to see it. 

Parent of a terminally ill child

Being a parent of a terminal child is harder than anyone could ever imagine. I still have days that feel so surreal that one day she will no longer be here. I keep thinking that they are wrong that she is going to defy the odds and outlive me. You are often knocked back into reality when things worsen and you are forced to get use to their new normal. Life becomes increasingly harder, you sleep much less than you did before (which is hard to imagine you can sleep any less that you did before with a special needs child), you have small hospital room in your home and they consume 98% of your thoughts. She’s all I think about and she’s all I want to be around. I don’t get sitters to give myself a break I get sitters so that I can give Clint the time that he doesn’t typically get otherwise. I spend 90% of my nights when I get home from work holding her or being with her. I use to run, ride bikes, and train and I have no energy or willingness to give up my time to do any of it. Not only does their life become harder for them but the things that you enjoyed the most have become something of the past. You want to work out and you want to do things for yourself but I’d much rather look back on my life and say that I spent every moment with her that I could rather than beating my marathon time from the year before. You also become aware of how people are to you. People have been amazing and so supportive. We’ve experienced some amazing things and people have given me some incredible memories that I can never thank them enough for. However, you learn that you are ostracized from some conversations because people don’t want to make you feel bad by talking about their circumstances. People assume that because you are going through something unimaginable that you can't share in their joys or their experiences. On the other hand, you have friends that stop being friends with you because the situation is too hard or they don’t like all the attention that your child is getting now. Guess what if having her be normal or not have to go through this and never getting any attention from others then I’d gladly chose that but thankfully you have people who love her and want to give her the best life that she can possibly have. I’m not sorry for that. You also lose the help that you once had because people are too scared or just don’t want to watch a child that comes with all this medical equipment, instructions on when to apply oxygen or when to call 911. It’s a lot and most people don’t want to deal with it or aren’t able to so you lose a lot of support. Thankfully you still have some incredible people that are willing to help out and that love spending time with her and you know without fault they will be there. I have the type of personality that I save all of my emotions for when I’m in private. I have days where I spend a lot of time on the phone with doctors, emailing nurses or texting about Skylar but when I’m at work I try my best to do my job. I might rush home so I can see my child and I might stay up way too late thinking, worrying or crying myself to sleep. I feel like I seem so positive because this whole situation seems so surreal at times. The idea that one day she will not be here does not seem to be real. One thing you should know about her, she likes to keep people on their toes and she likes to do her own thing. She is constantly stumping the doctors and leaving them scratching their heads trying to figure out what could be going on with her. I am still praying that she proves them wrong and they are scratching their heads 20 years from now. You also realize how many people have been touched by your child’s life. I never expected the amount of love and support that we’ve received this past year. I had no idea what was to be expected when we started on her bucket list journey. You also start to feel like some doctors have given up on what to do with your child when they hear the word Hospice. They can’t understand why any medical intervention would need to be done. I am not giving up on my child nor am I deciding that you can stop trying to figure out what might be wrong with her. There will probably come a day when 5-6 appointments a month or sometimes 3-4 in a week are not necessary but right now we are going to continue to fight. She is giving me everything she has so I will give her the same. Your life has a completely different perspective than it used to as well. You find yourself making the same wish when you blow out your birthday candles (yes I still do that), when you see 11:11 or 3:33 on the clock, or when you say your prayers every night. You pray for comfort and for strength but most of all you pray and wish that they would be wrong and that she will life and incredibly long life. I try not to dwell on the idea that she won’t be here one day I just think about the fact that she’s here. That’s easier said than done because you have to grieve a child that is still here. You are making plans and having to make decisions as if they were no longer here and you grieve them. You still find comfort in the fact that they are still here and you can hold them and kiss them and pray that one day your arms will never have to be empty without them. There are no support groups for parents losing their child. Especially single moms who have spent their entire adulthood raising a special needs child alone and having to experience such heartache without another half to lean on. You refuse to go to a support group for parents that have lost children out of fear that you would offend them because they are experiencing a loss so great and their world is shattered and you can try to talk about how you feel but in reality my child is still here. It’s unfair to assume that they could help me process what I’m feeling when they are feeling much deeper than I can imagine at this point. There’s never been a guide on what to do with a special needs child that is severely disabled physically and mentally and there’s especially not one for special needs mothers. Maybe that’s what I need to write. There’s no preparing yourself for this life but there’s no preparing you for when it ends either. You’re world is shattered when you realize that the life that you thought you would have has changed and the child you  dreamt of having is now going to need a lot more love, care, and attention. You realize that your life isn’t over but that this is an implausible blessing. You don’t miss the ideas of what a typical child would do because you have your own accomplishments and things to celebrate. However, what started out to seem as a shattered dream ends with shattered spirits and hearts because the child that you never expected is the child that you can’t live without. The child that changed your entire world is the child that has given you more life and meaning that you can ever imagine. There is no guide or manual to any part of this. You live day by day and some days are much harder than others but you wake up praising the Lord that he has blessed your life and has given you another day with the most precious child in the world.

All I want

All I want:

All I want is nothing more
To hear you knocking at my door
'Cause if I could see your face once more
I could die as a happy man I'm sure

When you said your last goodbye
I died a little bit inside
I lay in tears in bed all night
Alone without you by my side

But If you loved me
Why did you leave me

Take my body
Take my body
All I want is
All I need is
To find somebody
I'll find somebody

Ooh oh
Ooh oh
Ooh oh
Ooh oh

'Cause you brought out the best of me
A part of me I'd never seen
You took my soul wiped it clean
Our love was made for movie screens

But If you loved me
Why did you leave me
Take my body
Take my body
All I want is
All I need is
To find somebody
I'll find somebody

Ooh oh
Ooh oh
Ooh oh
Ooh oh
Ooh ah
Ooh oh

Ooh, if you loved me
Why did you leave me
Take my body
Take my body
All I want is
All I need is
To find somebody
I'll find somebody

Like you, ooh

The first few lines of the song, “All I want is nothing more to hear you knocking at my door cause if I could see your face once more I could die as a happy man I’m sure. When you said your last goodbye I died a little bit inside.” I just think about the people that have succumbed to their illness and those parents that have lost their child or children who have lost their parents. I can fully see how when you lose someone that you love that a part of you dies with them. Your world is turned upside down and the person that you love more than life itself is gone and you are forced to face life without them. Everything about your life is different. The way you think, your routine, your life has changed. The hardest part, I think, is that you will never see their face again while you are on Earth. You can't just call them up or go to their house. You only have the memories and pictures that you took. I can only imagine what a parent, a child, a brother/sister or a widow would give to see their loved one just one more time. These past few weeks have been extremely hard. I have lost family members and I’ve had my heart broken but I’ve never felt a loss a great as losing a parent or a child. I thought I might have a few weeks ago but I'm thankful God had other plans. I know family members that have lost their child and just reading their posts and hearing their experience is heartbreaking. One thing is true, “Cause you brought out the best of me a part of me I’d never seen. You took my soul and wiped it clean,” is very true. Skylar is best part of me. She has brought out things in me that might not ever exist without her.

I know the book is written about a person with cancer but the same applies to anyone that is dying. One of the things that the book mentioned was things being a side effect of dying. Mind you, I’m not dying so I have no idea what it feels like but to watch someone you love who is seems to be almost just as hard. One of the things that the book mentioned was thinking that you won’t die is a side effect of dying. I think that part is true. I try to be realistic about Skylar but in my heart I just keep thinking that Skylar is always going to be here. My head knows that it’s not true but it can’t seem to convince the rest of me that it’s true. She will go through a period where she’s in a great mood and feeling great and it’s a reassurance that she’s going to be here for a while. Her bad days make it harder but I still just get this feeling that she will pull through it like she always does. My heart doesn’t want to believe that one day that she won’t. Maybe it’s denial. It also said that nostalgia was a side effect of dying which I believe to be true. I have read often how much parents would give anything to have the affection of their child or long to experience a memory that reminds them of their child. How often do we lose someone and something will happen that will remind us of our loved one and the grieving process takes several steps backwards? It can be as simple as a song on the radio, a toy at the store, or a holiday. I’m scared to be one of those parents. I can see their hurt and their pain and I fear that I won’t be able to get through it. I worry that live will have no meaning for me and my reason for existence has left me for a much better place. I keep saying that I have big plans for the future and I have things that I want to accomplish but will I see a point?

I know I write a lot about Skylar passing and it can seem if a dwell on the idea. That can’t be further from the truth. When I am not with Skylar it makes it harder especially when she’s having a bad day. When I’m with her, I don’t think about it much. I take advantage of every second and I focus on her life and the time I have. If I had it my way, she’d never go to school. We would stay home together and she’d never have to have a bad day without me. I hate the fact that she will have a bad day and I’m not there. As her mom, I feel like I should be. I know the people that she’s with are fully capable of taking care of her but I’m her mom. I should be there and I never want her to feel like I’m not. There’s no better feeling when she might have a bad day and I pick her up and her face lights up. She gets a huge smile on her face and she knows without a doubt that her mom is there! It’s an indescribable feeling when your child, who can’t communicate, shows you how excited they are to see you and how much better you have just made them feel. There is nothing in this world that is better than that smile and that feeling where she communicates in her own little way that she knows me and loves me.