Down a long winding path, in a far, far away corner of the internet, exists a community of families with children just like mine. I found them with the help of new friends, and this group serves as a sounding board, giving advice and reassurance when you feel like you are doing it wrong. They help you understand, they console you, they lift you up, they teach you - and best yet, they help you to believe that it is not your fault. They too have struggled with raising a child that does not grow, and they too have gone through all of the testing, the struggles and the pain. (Insert an uber emotion Lindsey metaphor here) I feel like I've been on a deserted island and have finally walked far enough to find civilization - each of them landed here like myself, and each of them walking a long, hard journey for something better. Making everyone there so eager to share their experience and make sure you feel you are not alone. We are all very alike in so many ways - What a precious gift God has given me. I have needed this help for a long time - even more so in recent times.
New Friends
Last week, we were graciously invited for a play date with our new friends, Lauren - the woman who originally reached out to me and helped us get to Toby's diagnosis so far - and her family. Lauren's son has RSS - a genetic growth disorder that Toby is currently being tested for. We talked for a few hours while our kids played together, and were immediately finishing each other sentences. Our boys share almost every symptom together. Not eating, not growing, HG injections, vomiting, hypoglycemia and glucose checks. Even if Toby isn't diagnosed with RSS, it's a comforting and powerful feeling to have someone you can talk to who gets it. As a parent - your job is to care for and nurture your children. When you have a child that doesn't grow, you feel lousy and incompetent - they depend on you solely to live and thrive - and when they don't you can't help but blame yourself. I don't have the words to explain the relief it is to know you are not alone, and it is not your fault. I'm working hard to believe this each day, and Lauren and her family is making that within reach.
As if new friends and comforting shoulders weren't enough, Lauren's son also relies on Pediasure like Toby, to survive. Unlike my insurance, her insurance covers it - and sends her so much that they can't keep up with it. Usually she donates the leftovers to a program which gifts it to other children in need - this time - she gave it to us. Four cases, which would have cost us HUNDREDS of dollars - just given to us by this angel of a family. Along with it, other supplies her insurance company covers that will help Toby as well. Thank God for this precious gift - and hopefully life long friends.
Mess Ups
Our week had been just OK. Toby's vomiting has picked back up again - something I thought we might have been past after changing his diet. We are now on day 6 of our vomit/clean up cycle. I'm not sure whats worse - the constant cleaning or my lack of sleep. Toby needs his glucose checked at 830 pm and if its not high enough, again a half hour later. He's asleep by 930 and now that both kids are sleeping, I clean myself or the house. It's either one or the other. (So, if you come over and my house is clean, stay a good distance away because its usually a sure bet I haven't showered.) At 11 pm, once hes been sound asleep for a few hours, I give him his injection. After spending the next 20 minutes coaxing him back to sleep, I go to bed and hopefully am asleep by midnight.
My 2am alarm clock sounds, and I usually hit the snooze a few times before making my dreaded walk into his room, to wake him up with another needle in his finger to check his blood sugar. Between 5 and 6, he asks for a bottle, and shortly thereafter, my daughter wants one too. Then they are up at 730, with one more finger stick to get the day going. I am getting a good 5 hours of intermittent sleep each night, and its taking a toll on my mind, my patience and my intellect.
We've been able to struggle through the glucose checks - giving him stickers after each prick. Now he holds his finger out and shuts his eyes hard because he knows its going to hurt. He lets out a quick cry and asks if we are "Aw Done?", in a voice that shatters my heart everytime. I quickly say yes, and the stickers come out, and in short time, he forgets it even happened. I wish it were that easy for me.
The injections have been much harder. After our failed attempts at doing them while he's awake, we've tried a pattern of giving him his shot after he falls asleep. The first few times, he would wake up crying and confused, and I would rub his hair and give him hugs until he wanted to fall back asleep. But a few nights ago, I did something horrible. I had picked out his injection spot after checking my calendar, to make sure I wasn't repeating a spot I had just done. Deciding on his right thigh, I reached into his crib and with one arm held his leg down, pinching his thigh, while the other hand held on to the pen with his medicine, ready to inject. I guess I wasn't holding him down firm enough, because as I stuck the needle in, he immediately jerked his leg and screamed out in pain. The needle having just tore a three inch long cut into his leg because of his quick movement, blood dripping out. I was devastated. How horrible it has to be to be woken up three times a night to get stuck, but my carelessness just caused a horrible cut on his leg, and it must have hurt like hell. I got him out of bed and set him on the kitchen counter, taking a wet paper towel trying to stop the blood from oozing out. He was inconsolable, as you can imagine. Angry cries, kicking and screaming. I got some antibiotic ointment and a big band aid, and stuck it over his wound, then sat in his rocking chair in his dark bedroom, and let him cry on my shoulder. I couldn't stop myself from sobbing. I felt horrible. Here is my adorable tiny boy who depends on me to save him from the doctors and nurses, poking and stabbing, being his soft comforting arms that rescue him from his torture - and here I was, now the perpetrator. I cried because I knew he didn't understand. And it will be a long time until he will.
We both sat in the dark, rocking and crying, and in a moment he stopped, lifted his head and looked at my face, lit by the soft light filtered in through the door to the hallway. I could tell he was thoroughly confused by the sight of my tears, and it dawned on me that he had never seen me cry. The look of confusion in his eyes, I cried even more. I just want him to understand that I have to do this to keep him safe, I just want him to understand that I don't want to. And as if he was reading my thoughts, he shook his head saying the word NO - telling me not to cry. Tears now falling from his eyes again, but I truly believe for a different reason. He was crying for me now, not him. I can't explain why I know this, I just do. He laid his head back down on my shoulder, wrapped his tiny arms around me, and hugged me. We stayed like this until he asked to be put back in bed. Every time I think about this night, tears well up in my eyes. I can't write about it or talk about it without feeling an enormous amount of guilt and pain. I know its a culmination of all of the stress we've been under, the waiting and the frustration, and the lack of sleep.
The past few nights have been better, no cuts to speak of, but I'm more nervous now when I walk in that it will happen again. I hate that I have to do something every night I'll always be nervous about. Butterflies fluttering around, I wish they would go away. I know this is all very new, and I know that we will work out a routine in time. It may be a year from now when he can fully understand the reasons why, and I have to be patient and thankful until that happens. I can't lose sight of the fact that our boy is getting treatment he needs to stay healthy, even if it means I have to be a bad guy for a few years until he's old enough to get it. I pray every night that God gives me the strength to continue, I pray for God to make my boy understand. If you are praying for us, please pray that God's comforting arms embrace Toby in his times of fear, as his mother who was once the person to shield him from that pain, is now the one who is inflicting it. And please pray for my sanity given the above, that I can forgive myself one day for causing my son so many tears.
Thank you for listening,
Lindsey
My 2am alarm clock sounds, and I usually hit the snooze a few times before making my dreaded walk into his room, to wake him up with another needle in his finger to check his blood sugar. Between 5 and 6, he asks for a bottle, and shortly thereafter, my daughter wants one too. Then they are up at 730, with one more finger stick to get the day going. I am getting a good 5 hours of intermittent sleep each night, and its taking a toll on my mind, my patience and my intellect.
We've been able to struggle through the glucose checks - giving him stickers after each prick. Now he holds his finger out and shuts his eyes hard because he knows its going to hurt. He lets out a quick cry and asks if we are "Aw Done?", in a voice that shatters my heart everytime. I quickly say yes, and the stickers come out, and in short time, he forgets it even happened. I wish it were that easy for me.
The injections have been much harder. After our failed attempts at doing them while he's awake, we've tried a pattern of giving him his shot after he falls asleep. The first few times, he would wake up crying and confused, and I would rub his hair and give him hugs until he wanted to fall back asleep. But a few nights ago, I did something horrible. I had picked out his injection spot after checking my calendar, to make sure I wasn't repeating a spot I had just done. Deciding on his right thigh, I reached into his crib and with one arm held his leg down, pinching his thigh, while the other hand held on to the pen with his medicine, ready to inject. I guess I wasn't holding him down firm enough, because as I stuck the needle in, he immediately jerked his leg and screamed out in pain. The needle having just tore a three inch long cut into his leg because of his quick movement, blood dripping out. I was devastated. How horrible it has to be to be woken up three times a night to get stuck, but my carelessness just caused a horrible cut on his leg, and it must have hurt like hell. I got him out of bed and set him on the kitchen counter, taking a wet paper towel trying to stop the blood from oozing out. He was inconsolable, as you can imagine. Angry cries, kicking and screaming. I got some antibiotic ointment and a big band aid, and stuck it over his wound, then sat in his rocking chair in his dark bedroom, and let him cry on my shoulder. I couldn't stop myself from sobbing. I felt horrible. Here is my adorable tiny boy who depends on me to save him from the doctors and nurses, poking and stabbing, being his soft comforting arms that rescue him from his torture - and here I was, now the perpetrator. I cried because I knew he didn't understand. And it will be a long time until he will.
We both sat in the dark, rocking and crying, and in a moment he stopped, lifted his head and looked at my face, lit by the soft light filtered in through the door to the hallway. I could tell he was thoroughly confused by the sight of my tears, and it dawned on me that he had never seen me cry. The look of confusion in his eyes, I cried even more. I just want him to understand that I have to do this to keep him safe, I just want him to understand that I don't want to. And as if he was reading my thoughts, he shook his head saying the word NO - telling me not to cry. Tears now falling from his eyes again, but I truly believe for a different reason. He was crying for me now, not him. I can't explain why I know this, I just do. He laid his head back down on my shoulder, wrapped his tiny arms around me, and hugged me. We stayed like this until he asked to be put back in bed. Every time I think about this night, tears well up in my eyes. I can't write about it or talk about it without feeling an enormous amount of guilt and pain. I know its a culmination of all of the stress we've been under, the waiting and the frustration, and the lack of sleep.
The past few nights have been better, no cuts to speak of, but I'm more nervous now when I walk in that it will happen again. I hate that I have to do something every night I'll always be nervous about. Butterflies fluttering around, I wish they would go away. I know this is all very new, and I know that we will work out a routine in time. It may be a year from now when he can fully understand the reasons why, and I have to be patient and thankful until that happens. I can't lose sight of the fact that our boy is getting treatment he needs to stay healthy, even if it means I have to be a bad guy for a few years until he's old enough to get it. I pray every night that God gives me the strength to continue, I pray for God to make my boy understand. If you are praying for us, please pray that God's comforting arms embrace Toby in his times of fear, as his mother who was once the person to shield him from that pain, is now the one who is inflicting it. And please pray for my sanity given the above, that I can forgive myself one day for causing my son so many tears.
Thank you for listening,
Lindsey
this makes me so sad for you. i've been following your blog for about a month now and i cannot imagine going through this. your strength is inspiring. keeping all of you in my prayers and hoping things start to improve soon.
ReplyDeleteThank you for writing this! We don't have our diagnosis yet and I dread the thought of shots, then feel like a bad mom for dreading something my daughter may need. I can't tell you how much it means to hear from other mother's dealing with this stuff!
ReplyDelete