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Wednesday, October 10, 2012

Can I be Blunt?

I try to keep Carter's blog mostly informational and uplifting but I feel I'm not being true to myself and my feelings.  As Carter's Mom I have a lot of ups and downs and I feel to share Carter's life I need to share those as well.  I don't want to get too personal but I feel by being blunt I can help others out there struggling to not feel alone or wrong for their thoughts.  Carter has for the most part been an easy child until he hit about 2 years old.  That is when we had a lot going on and he seemed to go through some sort of developmental stage/infantile agitation.  He had strep in October of 2011 and was hospitalized for a few days, then in November we started him on the Ketogenic diet for seizures.  About Christmas time he had developed this habit of screaming for an hour a day for no apparent reason.  At this time we also had decided to have his tonsils and adenoids removed to help with his sleep apnea.  Whether the increase of agitation along with the new diet, plus the surgery just put him over the edge- I don't think I'll ever know for sure.  But following his surgery (which I've already blogged about) he was in the hospital for like 18 days for complications and extreme fussiness.  He was not sleeping unless they pulled him in a wagon and he cried for hours a day.  Totally unlike him.  We finally took him off the diet and put him on Neurontin and Klonopin.  With about 3 months of dealing with this darkness, depression and anxiety (while being pregnant no less) I thought a few times of giving him up for adoption.  I often hit my breaking point and only continued because of a wonderful and loving husband.  I even went to counseling to work through my feelings.

I finally shared my thoughts with family and Carter's doctor, and that is when I started researching for respite care like crazy.  I wanted to be able to get help for when the new baby came so I could be with her and not have to focus on Carter so much like I had for years.  About the time Sierra was born, Carter had finally gotten back mostly to his old self.  His seizures had disappeared, he was smiling and laughing again and seemed mostly content.  I thanked the heavens for this fortune as I could focus on my precious new baby.  Both our mothers also took turns taking Carter so I could focus on the baby for about 2 months.  We also had about 8 months of no major appointments, no surgeries or hospitalizations.  I think God knew I had reached my limit and with the new baby needed things to be normal.  In this time of calm Carter has learned to scoot, roll all over the place, stretch and roll everywhere and now goes on all fours and rocks back and forth.  He loves his baby sister and even hugs her and tries to touch her often.  I felt like I had expressed my gratitude enough for the blissful months of feeling "normal" and having Carter happy and pretty easy again.  But in the last month to more the last week or so, Carter has been acting out again with screaming fits and crying fits.  He has now been waking up from 3-5 a.m. instead of 7 a.m.  He hardly naps which is normal but with his increased agitation and less sleep I am starting to feel stretched thin again.

A decision we had made in August was to move closer to family so in the case of Carter being difficult and me needing more help I didn't feel like I had to panic.  I have this tendency to think of flight when I am feeling overwhelmed.  My wonderful husband has allowed me several nights in the past of being alone while he took care of Carter so I could relax.  I've also had many girls nights so I am very fortunate in my husband and his care of me.  Being a Mom of a special needs kid has truly taxed me and been the greatest challenge of my life.  We are now just houses away from my mother in law and 10 minutes from my parents.  I'm not one to easily ask for help until I hit rock bottom.  I often complain more to my husband and doctor than my family or friends.  I want to appear strong and capable and a good Mother.  I often feel guilty for having feelings like this towards Carter but it's true.  I love him of course but many times I question the point of it all and why he has to endure this and me as well.  I am also very aware that as his baby sister gets older I have to watch my words and actions carefully as she will be paying attention. 

With preschool nearing in a few months I feel like for my sanity more than anything else I want to send Carter to the all day preschool.  He will still have 3 full days at home plus evenings and nights.  I think it would be beneficial to him to get more attention, stimulation and therapy while I can focus on my baby girl and nap if possible.  When sleep goes away, sanity is not far behind.  I am often amazed at how many mothers can do it, especially those in our 1p36 group.  I know there are many without families close by too and they are amazing.  What I've always wondered though if they have the same feelings I have but just choose to not share and stay strong.  Well, I don't want to keep silent.  I want to share my feelings at the risk of appearing weak or a bad mother, so I can be honest and help someone else out there struggling.  I thought I could handle a lot but when it comes to Carter, I fold pretty quickly.  He has a way of getting to me like no one else can.  I am not an amazing mother nor do I pretend to be.  I just try to get him the most care possible and everything he needs to compensate for the days I don't feel so loving or compassionate.  I hope one day to find that place inside where I can accept him and my situation with a happy and capable heart.  But for now, I still struggle and paste on a smile when all is not well.  Again I have to thank my amazing husband and Dr. Murphy who has helped me through so much with Carter.  They never judge me but listen and help.  Thanks for reading this.


  1. Heather, your words are those of an honest mother! We all have times of when we feel like giving up! Not many share those thoughts and feelings! So, good job for standing up and being honest with your emotions! Keep on trucking girl! The Lord blesses those who help themselves! You are doing the right things!

    Love you and pray for you! I put your names in the Temple each time I am there. I know that none of this is possible without the Lords’ help! May he continue to bless you and your family!

  2. Heather, you're not alone. I think it's normal for us mom's to feel that way sometimes. I have bad days as well, and still struggle to accept my "new normal." I can relate and I'm here if you ever need to talk or vent, no judgement here, just understanding. Hope your day gets better!

  3. Heather I had no idea you were having such a hard time. I am always here for you if you need to talk. And if you want me to come over and help with Carter I am more then happy to. Being a Mom is hard enough with a child without a disability, but i cant even imagine how hard it is with a child with a disability. I am always here for you, and dont be scared to call!

  4. I think it is very good to be honest so that people know that it is okay that they are struggling too. I know that behind the "doors" on the facebook groups I am in, mom's often say how they toe the line between coping and falling apart. I know that I am on just one side of that line or the orher all the time. I know that people like to see strong, positive role models, but they need to realize that this life we lead with these kids is both beautiful and incredibly, gut-wrenching hard. It makes it harder to cope if you have to pretend you don't have ups and down. You need the energy for taking care of yourself and your kids, not for always putting on a happy face and pleasing everyone. I think you are wonderful! I am so glad you moved in. And if you want to know if I fall apart..the answer is yes..all the time. You are in good company. There are lots of us. But together we are stronger than we are alone I hope.

  5. I'm so glad you shared how you have honestly felt and been doing. People don't do this nearly enough. It shouldn't be scary to share what we really feel. It should be scarier that we are terrified to share what we really feel because others will judge us and label us as having serious issues. Some moms do feel the extreme feelings and hardships you do, others don't feel it as strongly and don't find it as difficult. But so what? We're all different, and once it is out there in the open, we can do something about it. It only festers and becomes worse when bottled up inside until it does become something serious.

    I have felt some of the things you're expressing and I don't have special needs child. I do find it really hard to not have family support near by and to have a husband who has been unable to give me much of a break due to working nights and going to school. But I've found help through letting people know how I feel and it gets better then. Now my husbands on a better schedule and life is a lot brighter in many ways, but those dark periods can be pretty dark.

    I told my mom last night that I get frustrated that my kids can push my buttons like no one else and anger and frustration come so quickly. I feel like I've met my worst traits in raising children, and I want to master them. My mom said it took her many years of raising kids before she could learn to not take what they do so personally. To see it from their innocent perspective and react when they do things like you would if they were an equal adult. That is what I'm working on. I love my kids and love being a mom, but it is hard for everyone, and I think harder for some. No matter our family situation, we have unique crosses to carry, and we need others to listen and not be afraid to hear what we are feeling.

    Thanks so much for sharing Heather. I hope you keep doing so, and your family will find the happiest path to follow.

  6. Great post! It takes courage to let it all out like that. Not to mention the courage to be a special needs mom in the first place! By the way, I met your parents on Sunday. They're really nice. They were visiting at church and recognized Whitney. It's a small world out there. :-)

  7. This made me cry while reading it. I have felt so much the same some times and yes feel ashamed to admit that I have had those thoughts. I read about other 1P36 kids and feel so blessed because Taylor does not have some of the health issues or bad sleep habits or other things but yes she is what she is and I was telling my friend just this morning "what if this is as good as it gets" "what if she never gets older than a 4/5 year old mentally" "I don't know if I can do this everyday for EVER"
    Some days are better than others but there are those days when I just don't know what to think and do. I know it is just little things that set me off some days and I just want to give her away. People tell me all the time she is so cute I want to take her home and I reply you can any day you want to. I mean that. They never come get her. lol
    It's great to have family around. It does get harder the older she gets because she is mobile and gets into everything and she is constantly busy and they don't realize how fast she is and what all she can do. If I did not have my daughter, Miranda 11, I think I could seriously do serious injury to her and myself. Miranda always knows when I'm going to blow when it comes to Taylor and she just takes her in the other room and saves us both. The therapy my daughter will need when she gets older. I feel that I am not a good example of a mother to her. It is so hard being a mom, especially to special needs kids. Then you add the "normals" in and it just is hard. Hang in there and keep talking about your feelings it is best to get them out!! And take some good anxiety pills!!!! You are human and a good normal mom. We all feel like this. We do the best that we can and that's all God asks of us. Thanks for sharing.

  8. Wow Jenny thanks for sharing your thoughts too. I appreciate that. That is wonderful you have an older daughter than can help you out. That is why I worry with Sierra, that she will see my example as a Mother and it won't be a great one. I try to hide my feelings towards Carter but some days I can't. I get those same comments- people thinking he is so cute and sweet and they love his laugh, etc etc. I'm like- take him!:) I am still trying to figure out the point of all of this, but I guess I still haven't learned the lesson I'm supposed to learn from Carter. If anyone says patience again I will scream lol! I think there is more to it than that. Thanks again for making me feel better!