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Saturday, December 17, 2011

Feeling like a Shut-In

I have read a post that covered this topic on a friend's blog- the family also has a disabled child and has struggled with feeling like a shut-in.  I didn't think too much on the topic until I started feeling that way myself.  Carter can be extremely difficult to take places sometimes, depending on the time of day or even just his mood.  He seems to be more sensitive and difficult lately, and it's hard to predict when things will go well.  We've frequently left church I don't even know how many times, because Carter freaks out and cries and won't calm down.  The only solution seems to be to leave, and he is calm once in the car or home.  Last Sunday we tried leaving him in his stroller, and we actually made it through all 3 hours of church.  I think it was successful because he liked being able to look around and not be held or touched.  I hope this solution can help us as we move forward, and eventually I hope a wheelchair will be even better.

After almost giving up on even trying to go to church, we started having problems with other things.  We've had to leave family dinners early because Carter gets upset at something and won't calm down.  Again, just putting him in the car and driving makes him super happy.  I can't just drive around all day all the time, so obviously not a solution.  Then it's happened where he is sick or in the hospital, and we have missed family events and/or parties.  We have also missed a birthday party because Carter just could not calm down.  I tend to lose my cool pretty quickly in situations like this; maybe because I'm pregnant and not feeling well anyway, but also because I don't feel like Carter is growing up or that he is behaving more like a toddler or child.  I feel more than ever he is a baby, because all he can do is cry to communicate his distress.  I wish I could reason with him by talking or even signing, but we are still reduced to panicking in a public setting while trying to solve our child's issues while he continues to scream and cry ever louder.  I've mentioned this before in other posts, but touching or holding him just aggravates the situation.  A car ride, or sometimes even medicine is the only real solution. 

I've become more and more frustrated as the events have piled up that we have been missing out on.  Not that they were all super great or exciting anyway, but it really sucks to feel left out.  I feel as far away from normal as possible some days.  I struggle with feeling "normal" or accepted even when Carter is behaving well.  Now that his unpredictable behaviors have us running for the car often, I don't even feel like trying anymore.  I know that if he is napping, absolutely nothing is worth waking him up for.  I know certain times of the day to avoid, but it isn't always predictable.  Because of my hubby's work schedule, I am often alone with Carter when I wish I could get out and go places and do things, but I know it's not even worth trying.  Being pregnant makes it really difficult to carry him around, get him in and out of the car, etc.  So these activities will eventually have to become limited on their own.  I'm sure it's a combination of the dreary weather, the dark, my pregnancy, and Carter-- but I sure feel like a loner or hermit a lot of the time.  I often find myself feeling very unfortunate in my lot in life, and trials.  I find it hard to find the motivation to keep going each day. 


  1. I’m so sorry Heather. I will come take care of him so you can come to the Christmas party tonight. Or bring him to your mom’s house and I will watch him in a quiet room! Don’t feel like you can come. I will help you!

  2. That's so hard. I've been feeling a little bit like that lately too. These days I HATE leaving the house by myself with my kids for any reason. They cry and are destructive and embarrassing most of the time. I know that it's not the same as what you have to deal with, but I'm realizing more and more that motherhood is SO HARD. It's easy to feel alone. You aren't you know, and neither am I, but it's so hard to convince yourself of that. We're visiting family for the holidays and went to Bridgeside ward last Sunday. I was sad to have missed you. I hope you have a wonderful Christmas and that things get easier somehow.

  3. Hey Heather, This is Taylor's mom, Jenny. As I read your post I was remembering how awful it was when she was younger and how out cast I felt too. I remember the first 3 years of her life we did not take her out for months during RSV time cause they told me to keep her home and safe from it. People called me a freak cause I was so carefull when I went out to do the shopping or whatever cause I would not touch anything and I sprayed disenfectant on everything and person who came into my house during those long months. Year after year. lol In the summer we still always got pnemonia and ended up in the hospital for days then too. I knew all the nurses on a first name base cause we spent all the time in there. I remember one stay in the hospital I never even walked out of the room for 2 days cause I was so depressed. I remember thinking as my other kids were little that I wished they would stay a baby forever. Taylor was our third and last baby. Well she literally stayed in the baby stage until she was 4 years old and she was so tiny that she looked like she was 1 1/2 for ever!!! People said I was so lucky I laughed and said you think that until your baby really doesn't grow out of it. Now she is 8 and is still in that toddler stage half the time. She plays like a toddler makes messes like a toddler loves playing with the baby noise toys with lights and so on. I call her bionic toddler. She loves to play with my friends little kids cause she fits in with them but she is the one that is a head and a half taller and can reach anything that they can't. It gets interesting some times the things they get into. lol At school she sometimes acts like a normal 6 year old even thou she is 8 and then sometimes not. You just have to go with it cause it is what it is. My husband worked all the time too and I was so alone for so long with all 3 kids. It is isolating and I'm sorry that your going through this now. I know how you feel. I had my phone friends that I called that were home bound too so that helped. Get you some. lol It's hard missing parties and things too. Taylor has never been a big fusser but she has been hard sometimes being places and I guess I am very blessed and lucky that I have great family support that has stepped in and helped as they saw my patience departing at events and took her off my hands. My poor other kids have missed out on stuff too which is hard to explain but as she got older it has gotten better. Hang In There!!! Most important... who cares what other people are thinking and whispering they should not be judging you and I would like to see what they would do in your shoes!! You are the only one that knows what is best for Carter and what he needs. So follow your instincs and pray. I can't imagine how hard it must be being pregnant and dealing with all this too. I hope you don't get real sick during your pregnancies. I know the Lord blessed me with her last cause I never could have done it any other way. There are many families out there like yours that have had other kids after their 1P36ers and I have so much respect for you women!!! Your amazing and strong!!! I am only a phone call away if you ever want to vent or just compare stories personally. I know that Taylor being older now is different and is every day a new challenge but I have been where you are and would love to help anyway I can. Hang In there your doing AMAZING!!!!

  4. Heather,
    I can't say I know what you are going through because I don't. What I do know is we all have trials. Some with our kids, some with our health, or our husbands, or marriage...etc...

    Feeling left out of things and alone is a hard thing to go through.We all need an outlet, friends to talk to and to get out and enjoy fresh air, sunshine and the company of others. As you have researched and asked questions of your doctors do they think that Carters meltdowns will get better with time? Is this a common thing with children that have 1p36? Will he be able to adapt better to outside stimuli as he gets older? If so then view it is teporary. In the meantime can you make playdates with other moms and children that are in a simular situation? Can you form a group where you each take a turn babysitting for the other so you can each have the chance to get out and have a little down time?

    I know it is hard to leave our children when they don't have any physical challenges, and even more so when they do. But you have to get out by yourself and with Chris. Your spirit needs to breathe and grow. You have to be healthy and whole or you are no good to yourself or Carter. Let us...your friends know...what can we do to help? We can only take directiin from you. Let us help.

  5. Sorry I haven't been able to respond yet. Jenny- thank you so much for your post, it's great to feel that other people know what I'm talking about. I appreciate your kind words and support. Thank you. Cricket- I wish we could have more people help out; it just takes a lot of training to have someone be able to feed Carter, administer his meds, and take care of his behaviorial issues. Fortunately, my mom and dad are really trying to help out more often so we can go on more dates. They feel comfortable with his feeds so that's great. It's just nice not to feel trapped. Thanks for your words of love. Debbie- we had to miss out on the Christmas party, but thank you so much for offering. You are a wonderful Aunt. Alex- i'm sorry we missed you!