Saturday, June 16, 2007

A hard Day

Don't you really dislike it when you do something and then feel guilty for a long time afterwards? I mean when you accidently get cross with your child and it wasn't their fault and you feel really bad?

I have been having a frustrating time with Isaac's poo toilet training. Remember how I said that the paediatrician mentioned that it was a problem with his brain and the receptors on the bowel..and that it doesn't tell him that he needs to go to the toilet until his bowel is so stretched so the poo-poo is SO big. It then hurts and Isaac becomes really anxious about doing it on the toilet. Not only that, when he relaxes to go to sleep it will come rushing out...usually he has a nappy on for sleep time...but I put a mattress protector on his bed and have tried without the nappy for afternoon sleep time, hoping it would encourage him to go on the toilet. I keep forgetting that it is not his fault that he feels anxious....and I afraid to admit that today I got really frustrated and got cross. I have not been able to shake the feeling of guilt over being cross at him when it came to poo-poo on toilet. I apologised...said I was sorry to him..told him I loved him and gave him a big cuddle and told him that I know it is not his fault and mummy is really sorry that I got a bit upset about it all....let me backtrack a bit. The medication that he is on to help soften the poo and stuff is an oil and if they are on a too big a dose it will leak out their bottom...he has been soiling lots of clothing because of this and I have tried to keep my calm...because I know it is not his fault. Today he was sitting on my lap and had some wind and soiled a lot and so I encouraged him to sit on the toilet and we both became distressed...he sat there but got all upset and I knew he had poo-poo to come out because he had been holding it and some came out on his pants..I just wanted him to sit a little longer but he was being "difficult" and I became upset and frustrated....and he cried...and I feel SO bad about it. No matter how many times I say sorry I feel SO bad that I let myself get frustrated and showed it when it is not his fault. So the medication needs to be decreased by 5 mls to help stop the leakage and then we won't have the soiling problem...Isaac never soils even though he doesn't do poo-poo on toilet...he never soils anything but will do the poo-poo in the nappy while sleeping. I need to stop this leakage because it is causing Isaac distress, mummy distress and daddy at times too...we feel distressed....so if we can sort this dosage out and try to remember, "it is not Isaac's fault"...we can get through this....I will ring the paediatrician to keep him up to date I think so I have support in trying to work through this issue. He is toilet trained with wee-wee....but I keep thinking that I have a deadline to get this fixed up and that is probably putting pressure on me and making me feel a bit distressed. I need to still do this at my own pace and most importantly..at Isaac's pace and keep in touch with the paediatrician so I don't feel alone and so I don't panic that there is anything else that I need to do to help Isaac. May be, then, I won't feel so frustrated..so distressed because this really distresses me...and if I am distressed..surely Isaac is distressed..and Alan.

Now down to health issues. Isaac is feeling much better...still runny nose and cough but his energy levels have increased today and he is eating better...on the mend. I definitely had what Isaac had and are are getting better but I still have hardly any energy and went i went to the shops today, only after a couple of mins of being in the shop I felt clammy and like I was going to faint. Alan...well he is now sick. He was feeling a bit off yesterday but ok. He has had some ulcers and a sore throat a bit and I thought he may be fighting it but today he is feeling less energy and has lost a bit of his voice and is coughing a bit...he said he is feeling weird and he has been lying on the couch! A definite sign of unwellness. I don't think either of us will be at church tomorrow. It is not a nice virus either. Isaac had the day of temperatures in the high 38 degrees C...and it landed me in bed and so Alan is at the beginning of it.

I also was a bit anxious the last day and had some nightmares last night...woke up with a bad headache this morning...I have not been feeling the most emotionally stable today. I was supposed to have a haematologist appointment yesterday but was too unwell to make it. Alan went in my place to discuss a few things and one of the few things really upset me...what the haematologist said....you know, we all know about the negative things about FA but it is really hard when a doctor or doctors keep driving this information down...I know about how bad FA can be but I am trying to keep on living and live hope in my life by making certain decisions to do some special things with my life and it feels really discouraging when they keep going home of this risk thing.....if all I did was live according to all the risks with FA i would not have become a registered nurse...a mother...a wife...travelled and all sorts of things....I feel very restricted by the medical world. My old haematologist...the one I really liked..used to tell me that he knew I understood all the risks so he was not going to keep mentioning them because I am an adult and we had discussed them and he knew that I was in my right mind and that I should be able to have hope and live life because I know what the risks are and I am making fully informed decisions....so I felt like I had hope to do things to just live but I have struggled with my right to do that since he left...it has been so discouraging. Well, I had tears over some things that were said and Alan and I discussed them and we know how we feel about these things and are standing firm because we know what we want to do as a couple, as parents...as individuals who face this disease..we know what we think is best for our family......I am not actually gonna talk about our secret discussions as husband and wife......they are for us right now...

Anyway, so I don't have any any funny things to discuss today...sorry...all deep stuff.

I sure hope I didn't do any damage or cause more anxiety for Isaac with my accidently upset...I don't want him to think I am cross...he seems fine now but I worry! It is so hard to do everything right as a parent, an individual and a wife sometimes...that is life though...God is helping me. I have to remember that...He really is.

Ok, well til later,
Love Charisse

16 comments:

Unknown said...

i feel sick.. boo-hoo.. WHAAA WHAAA
send your sympathy to abhjones@bigpond.com

Thanks,
xx

Leslie said...

I know things are hard in life. You have good desires and I can see that you love you family very much. What you said about not having a deadline for him to poo-poo train is true. Things are always harder when you are sick too.
Just do your best and turn the rest over to God.
Take care

Anonymous said...

Charisse, thanks again for sharing your life with us, both the good/funny and the sad/hard! As a parent of 5 who are now grown and gone, I remember many times where my husband and I worried if we were doing the right thing for our kids. And all 5 were different so what worked for one did not work for the next! The thing you need to keep reminding yourself of is that loving your children is THE MOST IMPORTANT thing you can do. They know we aren't perfect and neither are they. We all need to be forgiven at times. Just tell him your are sorry and that you love him no matter what. That is the lesson he will learn for his own life -- when you mess up, you say you are sorry.

Love and hugs from Kathy in Louisville, KY!

Anonymous said...

Hi Darling.

We love you heaps and we will be praying for you all -- all three of you. I am sure that Isaac will get the hang of things at the right time -- there is no pressure. I am also certin that no lasting harm has been done. You are a wonderful mother. Also we will keep praying with you about the secret plans. God does have some good stuff for you.

Lots and lots of love

Dad

Anonymous said...

Oh, the woes can really get us can't they my dear friend. I understand about the toilet training problems, my little John didn't train until he was almost 4 years old. The only way we could get him to wee in the pot was to start letting him go outside behind the trees, we live with only one house on one side and trees everywhere else lucky enough. Don't worry about Isaac, children are so understanding. In my opinion, if they see you are human and get cross every now and again and then apologize, it helps them to realize that it is okay to have these feelings and it is how we handle these feelings that matter. And when they see us say the words "I am sorry" they learn how to be apologetic when they need to be. You are human after all, mothers and fathers are not super human, and we all feel emotions and have to deal with them. Forgive yourself, I know your son does. As for the doctor issue with the limitations and such. Tell him you know the risks and probably better than he does, and that you are an adult and will let him know what your decisions will be. You are such a strong woman, with God on your side. Let the doctor know just how you feel.
Thank you so much for your post on my blog site. You don't know how much it helped me to know you are there to support me and encourage me. I love you so much, and pray to met you someday.
Your Friend always,
Judy

Charisse said...

Thank you EVERYONE for your encouragement. It really helps and I really take the advice on board. It is nice to know that you are not alone. I really appreciate it.
Love Charisse

Anonymous said...

I'll just let you know that we drove back from the Boston area today to Maine after attending a fundraiser for Fanconi anemia. The Levine's have a memorial golf tournament in memory of their daughter Coley who passed away from FA and AML at the age of six. Anyway, the point is, we were there for three days and Quinn and Welsey barely got naps and were up until 10:00pm every night. We had a great time there. Until the three hour ride home. Quinn and Wesley and Collin for that matter fought the whole ride home. "Stop copying me!" was screamed a billion times that trip and I thought I was going to lose my mind. Quinn yelling, "Wesley hit me" and Wesley yelling "she has my Luke Skywalker!" Three hours was too much of this constant banter. In my mind I kept telling myself, "they are just tired, don't get mad!" But, finally I cracked after hearing "she hit me" for the last time. I too yelled and said, "no more talking until we get home! That is enough fighting!" Yes, I yelled and I knew why they were at eachother's throats but I just couldn't handle the bickering anymore. It happens. It doesn't make you a bad parent. Isaac knows you love him no matter what. He will always know you love him no matter what. It was also nice to say sorry to him because that does teach him that it is okay if a mistake is made but it's just as important to recoginze it and apologize. Okay, now I feel guilty and I should go upstairs and say sorry to my kids ;0)

Hang in there. You're baby knows you love him. Everyone loses their patience sometimes. If you come to visit us you'll feel like mom of the year after you hang with me for awhile ;0) I'm just kidding, I'm really not THAT bad. Hugs, hang in there, and good luck with the potty thing. Hope your "big" baby feels better soon too.

Anonymous said...

These words have always given me great comfort. Know that I'm praying!
Romans 8:26-27 Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God.

Anonymous said...

Get him distracted while pottying! Reading a book, telling him a story..singing, anything so as to not focus on the "main event!" This use to help Spencer and give him a little privacy with Mom in the room too! It worked! Hope it works for you as well! Glad you and Issac are feeling better! Alan, sorry you have it now!
Blessings and Bear Hugs,

Anonymous said...

Praying right now!
Romans 8:18 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.

Charisse said...

Thanks to the more people who commented with a lot of encouragement. It really helps...I am trying a lot of things that are suggested ......I hope they help. Thanks, guys. you are great.
Love Charisse

Pam Sturgill said...

Charisse
Keeping you all very much in my prayers.
Sending love hugs & prayers to all.

Anonymous said...

May you always look to the Lord in time of need! Praying!
Psalms 91:4 He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler.

Teresa said...

Hi Charisse!!

I'm so sorry for being so behind on responding. You already know why though since I emailed you about it.

I'm sure you feel horrible over Isaac, but just like Kristin said, we all make mistakes. Sometimes there is so much going on and emotionally we hit a limit. It sounds like that is what happened. It REALLY is okay if he takes another year to potty train. He has something abnormal to deal with and it's okay if he's not like all the other kids with potty training...no time limits... ;-) I hope you forgive yourself soon.

I also hope you and your whiney husband feel better soon (hehe...Alan's comment made me laugh). It was fun to read your dad's comment too. I love your blog!

Keep following those thoughts and feelings you are getting to guide you in your life. I hope the dr hasn't gotten you too down. I'll email soon.

Love,
Teresa

Anonymous said...

What an amazing list of things the Lord is! Know I'm praying as always!
Psalms 18:2 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.

Anonymous said...

Charisse,

I've just read your latest post on being turned down for the grantt o come to camp. That is hugely disappointing for all of us. We will keep our fingers crossed that something comes through in the final hours and that you can somehow make it.

Love,
John Hanna