Overdue Update

Well, here I am neglecting my blog again. It would be great to devote more time to this, and I hope to start doing that soon. I have also wondered if I should move the blog to a real address rather than just blogger. It would be nice to be able to separate things by category...then again the main thing I would want to keep separate is my book reviews (unless people actually like those being here). I could just have a separate blog for them.

Well, there has been a bit going on in the past couple of months. I will do the update by person.

J - The Husband

He was recently promoted to Major. This is one of the "big" promotions as it changes him from a Company Grade officer to a Field Grade. It is a little more pay, quite a bit more responsibility. It is good for his career that he made it as quickly as he did. He has to go to a school now though..which is a lot of work. However, he is brilliant and I am sure he will do well. (No, I did not get the word brilliant from Harry Potter...I have always talked like that.)

D - Me

Not much as changed with me. I am going to have to start eating healthier and exercising more. I found out I have very high cholesterol. I am proof that very skinny people can have this problem. For those who do not know me...I am 5'3" and weigh about 105 pounds. If I can have high cholesterol anyone can..so be sure that your cholesterol is good. Please get your's checked..even if you are skinny and appear to be fit.

S - my 7 year old girl

S has had a lot going on. Her brain tumor is getting more symptomatic. Some of the things I am not going to go into in order to protect her privacy. However, things have not been easy for her. She is struggling with reading (she says the words move around on and off the page). She is having problems getting along with some of the other children her age. We have some appointments set up in the next 2 months at Vanderbilt. I am hoping they can provide us with more answers than we have now. We ask that you pray for the doctors we will be talking to, as well as us. We want to make the correct decisions regarding her care. Within these appointments are some appointments that will involve big decisions.

I - my 5 year old boy

I is still about the same. He excels in all things academic. He struggles with transitions and being able to deal with not doing something perfect the first time every time. He is very competitive and has problems dealing with losing in games. He is able to sit through classes now though without getting too upset and is able to deal with other children being around him. He starts K in the fall. I am going to be working with him until then making sure he can do everything they want him to be able to do. I think where he will struggle the most is the fine motor areas.


C - my 2 year old girl

She will turn 3 next week. Where did the time go?

C is still very behind in her development. The scales they do at doctor checkups put her at 18 months. She has a development screening through Child Find . It put her below the 7% in almost all areas. The only normal areas were cognitive functioning (meaning she is able to think and form some sort of answer at least in her head) and receptive speech. Both of those were in about 50%. Her speech is in the 3%. (This means that if you grouped her with 100 children her age, 97 of them would speak better than she does, 2 would not speak as well). In counting she was in the 1%. but they assured me that was her speech causing the problem and not a predictor of mathematical skills.

We also had what we had expected all along confirmed. She has a reduced visual field. (She can see just fine straight out, but cannot see to her sides or toward her feet.). They put her visual field at about 40 degrees. Normal is 180 degrees. This is what many people refer to as tunnel vision. (This could very well be due to her optic nerve tumors. We will have to consult the doctors a little more to find out for sure.)


She scored low enough on the screenings to qualify for a special education preschool. She will go 2 days a week. She will receive speech, occupational, physical, and visual therapies and interventions while she is there. She starts the week of her 3rd birthday. I have heard great things about the school and hope I will get to hear her really speak to me soon.

She also has a lot of appointments coming up and we ask for prayers that the doctors and we make the right decisions for her.


More Stuff

We are just taking things day to day at this point. There is no way to know what the future holds. People ask me what gets me through all the appointments and all the uncertainty. My answer to that is simple. It is my faith and the ability to count my blessings. I do not understand how people make it though things like this (and worse) without it. Sometimes when I feel down and the worry and mom guilt is getting to me, I listen to Christian music as well as turn to the Scriptures. Below I will share some of my favorite songs as well as scriptures. The names of the songs will be linked to videos on You Tube, so you can listen to them if you wish.

Before anyone gets mad and asks what I have to feel so bad about since my kids are still alive and their are kids who are sicker - I realize that. I do know I have a lot to be thankful for. Still, what they are going through is real. It may not be as bad as what other people suffer though..but it is still hard. I am not just "feeling sorry for myself" or "wanting attention". I just want people to pray for my girls (and Ian). I do not want life to be hard for them. I want happiness and health for them. I do count my blessings, as I said previously..that is one of the things that gets me through.


Scriptures This is not an exhaustive list...just some favorites. There are many many more that could be added to this list.

Psalms 9:9

Psalms 46:1-3

Psalms 91:10-11

Psalms 146:8

Matt 6:34

John 14:1

John 16:33

Romans 8:28

1 Pet 5:7

1 Chronicles 16:11

Psalms 23

2 Timothy 1:7



Philippians 4:13

Romans 12:12

Jeremiah 29:11

Psalms 27:4-5
Psalms 27:1

Isaiah 40:28-31

1 Corinthians 10:13

Joshua 1:9-11

Matthew 17:20

Deuteronomy 31:6

The book of Job is also an excellent source to go to when you are thinking you have more than you can bear.


Songs

Because He Lives

Blessings - Laura Story

Praise You in This Storm

Count Your Blessings (wish I could have found a better link for this one..this one sounds too autotuned for my liking)

I Know You Are There - Casting Crowns

Who Am I - Casting Crowns

Voice of Truth

It is Well With my Soul (please read the story at the bottom of the video. The person who wrote this song went through more than anyone should have to. Still, his faith in God gave us this beautiful song as a result of his anguish.)

The Most Asked Question - How Do I Do It?....

When I was little, I always dreamed of being a mother. I wanted 3 or 4 children. I wanted at least 1 of each. I got my three children, and I have 2 girls and a boy so I have exactly what I asked God for. He blessed me with my 3 sweet children. Not everyone is blessed like that, and I am grateful for my blessings.

I had not planned however for them to have the problems they have. I do not think anyone does. No one sets out praying for God to give their children problems or disabilities. Let alone all 3 of the children having problems. However, it seems God felt that John and I were up to the task and decided to bless us with 3 of his very special children (not that all children are not special, I hope you understand what I mean).


In reality, I do not see their problems as being too bad. I guess that is because of the group of friends I have due to their problems (especially in the NF and oncology communities). I know it could always be worse and I am reminded of that every time I hear of a small child going blind or deaf due to their tumors, a child losing a limb because of a bone abnormality or a tumor, and every time I hear the sad news that a child lost his or her battle with neurofibromatosis and/or cancer. I do not let myself focus on those things but at the same time I pray for the child and family and then say a prayer of thanksgiving that so far we have been lucky in that regard.


I try and think of the positive things as well.

Yes, S struggles a lot with her ADHD. However, with ADHD comes an insatiable appetite for life. She may jump from thing to thing with lightning speed, but she lives life to the fullest. That abundance of energy keeps her going and if we ever get the attention under control will serve her well in life. Yes, her brain tumor is in a very bad place and can someday take her life. (A child can also be killed in a car wreck, but do you focus on that every time you get in the car?) I instead think about making her life fun for now. I do not want her focusing on that and if I do she will.

IE has his meltdowns, true. I will probably never see him get on a stage willingly and perform (unless someone is holding him) but that is okay. He is so smart and so logical. In fact how logical he is makes me laugh all the time. However, he is the type of person who will grow up to do great things. He may not be super social..but he will make a difference in the world. It is just my responsibility to help him learn to keep his emotions in check and to know his limits so he knows when to remove himself from a situation before he goes into sensory overload.

C cannot say her name. She cannot tell me those 3 words every mom longs to hear, "I love you". However, I know she loves me. She can communicate without words. With her, every milestone she reaches is more of a miracle to me. She has been a lesson in what we all take for granted. I had never really thought about what a miracle speech is or throwing a ball. Everything with her is slow motion, so I get to revel in every remarkable thing she does. Every single word she learns to say is a miracle. Every new motor milestone is a miracle. These are things that I did not pay as much attention to before. I also do not focus on the tumors that may one day take her sight (or worse) but make sure that she too is living life to the fullest today. After all, tumors or no tumors, no one is guaranteed tomorrow.


This is not to say I do not get angry or sad. I do. There are days when I wish I could just lie in bed and cry...but then I remember the reasons I have for not doing that. My 3 special blessings and my wonderful husband (who is also a blessing).

So when you ask how I do it..there is no easy answer to that. I do not really think it is me doing it. I think it is God and Jesus carrying me through due to not only my prayers. but the prayers of countless others who are praying for us. And I thank all of you for your prayers, they work.