Grace of God

Evee had a great day at PT/OT (Physical Therapy/Occupational Therapy) today.
She had OT first and right off the bat she was doing some sitting positions to have her hold up her head. She held her head up for 10 minutes straight! She was working so hard, you could tell for she created a big pool of drool (she drools more when she is focused on working on something difficult).  Usually if she was put in this position, she would complain or cry, but today she was smiling and pleasantly interacting with those around her.
Later Miss Betsy, Evee's PT, commented on how she could tell that Evee has been getting stronger. Again Evee held her head for a longer duration (which is not easy, it is a big and heavy head).
I was so proud of her and can't believe the progress she has made.
It is so funny how we become more grateful for things when someone like Evee blesses our lives.

Todd and I have had the opportunity to meet two children with M-CM and their families. This is incredible considering that there are only 140 recorded cases world-wide!
The first we met was Cara, a 17 year-old girl that lives in Pennsylvania. We traveled to her home on Election Day. Her mom, Christine, contacted me on Facebook and offered to meet. I was thrilled, and nervous. I was thrilled to be able to talk to someone that had experience with this syndrome. I was nervous for when I saw the pictures of her daughter I was reminded of a Down-Syndrome girl I had helped for many years while we were in high school together.  I wasn't sure I was ready for the reality of what the M-CM Syndrome may bring.
The visit was good..... and hard. I loved seeing how this family embraced Cara, even with all her challenges, and that they loved her and had grown to become better people because of their experience with her.
It was hard, for my rock of "denial" was starting to be chipped away. Denial was where I was safe, denial was familiar, reality is not.
Todd and I left grateful for the experience, but very sober with the reality that Evee could very well be in a similar state. The next day was very emotional for both Todd and I, and it had nothing to do with the outcome of the election. We had taken a step forward with embracing Evee's future, but it is hard to emotionally come to terms with these things.


A few days ago we were able to meet another family in Ohio who have an 8 year-old with M-CM. Their son, Bobbi, is on the severe spectrum of the M-CM scale. He had just started walking on his own this summer, and even then is still wobbly. He is non-communicative and I would estimate that he has the mental capacity of an 18 month-old.

Suddenly the prospect of having Evee be similar to Cara was an awesome prospect, one that we desired.

Today I talked with my friend's mom, Carol. This woman had a premature baby who had complications. After two months in the NICU, the doctor's discharged the baby to die in her home. She had a genetic syndrome, one where few ever lived past the first year. Every night Carol and her husband took turns sleeping with their baby girl on their chest so that she would not die alone.

This girl is now 31 years-old.

Carol was told that her daughter would be developmentally delayed.

She is now a professor at BYU.

This girl, now woman, has defied the odds. She went against what all the professionals were saying would happen. She surprised all those around her. She blesses the lives she touches with her strength and love.

So where do I put my hope?
Do I hope that Evee will be similar to Cara, where she has the cognitive abilities of a 4-5 year-old, or is that even too much to hope for?
Do I hope for the near impossible of having an outcome similar to Carol's?

Honestly, I only have a sure hope in God.

Only God knows His plan intimately enough to fully understand Evee's purpose in this life. Only He knows me, Todd, our family, our friends, our community, and Evee well enough to know what is best. He loves Evee, even more than I do (which almost feels impossible for she has my heart in her hand). He will not fail her, he will not leave her.

Yes, I wish that my Evee would not have any problems or any delays, but only in my comparatively minimal wisdom do I wish for that.

I saw how Bobbi's parents were with him. They love him. He is their world. They are willing to do anything for him. Yet, he has never uttered "I love you" to them. There is much that he has taught them about love, about service, about God, about themselves. Even in the state that he is in, Bobbi is doing so much good in the world and bringing a lot of joy to people.

 I do not know what Evelyn's developmental destiny is. Right now I do wish I could control it and change it based on how much therapy she goes to or how much I work with her. But ultimately, I trust God. I understand that faith without works is dead, so I will exercise my faith and give Evelyn every opportunity to grow and develop, but I will try to remember that it is in God's hands. Thankfully it is in His hands, for He does know best. There is a purpose that I may not be aware of, but God is always mindful and aware of each of us.

My dad pointed out that William could have had some major injuries from his accident of falling out of the car. But William was spared only because of the Grace of God.
At the same time, with that same Grace that God has, Evelyn came to earth in the situation she is in.
I was willing to accept God's Grace when it saved my son. May I be as willing to accept the Grace of God as it affects my daughter, her life, and ours.

5 Months

 Miss Evelyn is 5 Months old. One big thing about 5 Months, is she has discovered.....

her hands!!!!

She absolutely loves her hands. One day she just discovered them and how to work them, and she has loved them ever since.

 Her PT, Miss Betsy, and OT, Miss Amanda, have been wanting her to use and move her hands and arms around. She sees PT and OT once a week. The week she came back to therapy knowing how to use her hands, she flashed them around, showing off the entire time. She didn't try holding up her head very much, but she kept flashing her fingers around as if saying, "Look what I can do".

 Miss Betsy and Miss Amanda think Evee is just wonderful. She likes them too, but she hates how they make her work hard, especially Miss Betsy. I think Evee knows when she is going to therapy for once she's in the room, she starts "complaining", which is really just low grumbling noises. She will comply for a few minutes doing the same thing, but then will start crying to be released from the position or work.

During one of her crying fits while being held in a working position, Miss Betsy told me to let her know when I couldn't handle the crying any longer. I probably should have explained to Miss Betsy that I am an endurance runner, I understand you have to go through some pain to get stronger.

 

There are only 3 things that Evee likes during therapy. 1- Her hands  2- Mardi Gras Bead Necklaces and 3- People talking (she still is very social)

Evee's therapist have been wanting her to start grabbing for her feet, especially since they're just flopped out. We haven't had much luck with that, but she just recently started noticing them if she is in a position that naturally curls her body towards them. 

Evee spends a lot of time in the bouncer. It holds her in a great position that makes her do some work, but also can relax a little bit. Also, I am able to put the bouncer on the counter while I cook and such, which keeps her safe from her 4 brothers.

 Evee is still quite popular in our home. The boys absolutely adore her, and cannot get enough of her. They never have shown any jealousy about her getting so much more attention. It does help that she loves them back and will give them lots of smiles and approval as they are yelling in her face.

 Evelyn got to meet a 17 year-old girl with M-CM. They thought each other were pretty neat. It was cute to see them together.

 I am so in love with having this little girl in my home. I LOVE having a girl. It has been so much fun to dress her up and such, and I'm not even much of a girly-girl. But I also really love WHO Evee is. She is such a joy. She is such an easy and nice baby, so social and happy to all those around her.

There are times that I swear that Evee understands a lot more than she should. She seems to know when people are talking to her, or about her. She will perk up and smile whenever she is told that she is beautiful or a princess.

She does a good job at smiling for pictures, which she should since I take a gazillion every day.

Evelyn hardly ever is upset or sad, but when she is, it's usually for good reason.

Sure am grateful to have this special little girl in my life.

Gratitude

In church today, the speaker challenged us to imagine if we woke up this morning and had only all that we had thanked God for the previous day. I thought it was an interesting concept and really liked it.
There is so much that I am grateful for, I really could go on and on, but I thought I would share just one experience from this last week that filled me up with gratitude.
Our prescription insurance is not as awesome as our medical insurance. We found out the hard way that if a person is on a prescription for more than three months, the prescription has to be filled in a 90 day supply. This means it is a totally different prescription written by a doctor and that prescription cannot be filled by your average CVS or Walgreen, but rather it has to be mailed to you. This cuts the cost for the company, and I do understand the reasons, but I just wish that they would have informed me of this policy when I was getting the third month's prescription refilled.
I will admit, it was my fault. I should have known the benefits and policies of our insurance, but honestly we have never really used it much. They say the shoemaker's kids go shoeless, well, in our case the doctor's kids get no medical care....except Evee of course.
I had a lot of trouble trying to get one (of the two) of Evee's acid reflux medicine filled. I had to get a new script from the doctor, then I had to talk to the insurance, then I had to get the doctor to call in the script for it would be quicker, then that all had to be processed, etc. At first I wasn't too nervous. But after Evee was out of the medicine for a couple of days, I was getting upset.
Evee was affected and in pain because of the reflux. She needed that medicine. She was cranky and not herself. I would feed her to soothe her, but then that would cause even more problems for the food caused more acid to come up her throat. She was exhausted for she wasn't able to sleep very long or often. It was just so hard to see your helpless baby writhe in pain while you cannot do anything.
Nine days (yes, 9 days) after Evee's medicine had run out, we had had enough. Todd and I had gotten into an argument. It was a frustrating argument for in reality we were just both very frustrated at the situation and exhausted from very little sleep the last few nights. I had found out that we were still about 5-7 days away from receiving the medication.
Todd decided to go to the nearby pharmacy to see what he could do, to see if he could even find some sort of substitute or even pay for some pills out of pocket. He talked to the pharmacist and explained our situation.
The pharmacist asked Todd about the dosage and what was needed then went to the back. When he came back he handed Todd a bottle with a handwritten dosage label. Inside the bottle were 7 tablets. Todd was so grateful to see this precious medication and when he asked how much he owed the pharmacist told him to not worry about it.
I know that those pills were not cheap, for it is very pricey for us when we have to pay the co-pay for them, so I can only imagine how much they were without the insurance.
I have never been so grateful to have Todd bring home something. It was amazing how quickly Evee's body reacted with the medication. We soon had our Evee back. That night she slept longer than she had in a long time. She was pleasant and social the rest of the time.

I am so grateful to this pharmacist. He may (or may not) have been breaking some rules, but I was grateful that he was willing to help out a father with a special little baby. I was grateful that someone was listening to the spirit of the law, rather than being uptight and square. I was grateful for the relief that my baby received.
Todd would have paid for the tablets out of pocket like he intended to do, but I was grateful for the tender mercy that we received. It is nice that we were able to save some money, but it was incredible to see the kindness and compassion that this one stranger had. I also felt gratitude towards God. I felt that through this kind man, God was able to let me know that He has not forgotten me, that He is here with me, that He knows my pain and knows my desires and is helping me through these trials.
So much to be grateful for.

On more of a documentary note, for Thanksgiving we went down to Todd's parent's house. We had a great time, especially since the weather was nice. This afforded us to be able to play freeze tag and other outdoor games with the kids.
The day after Thanksgiving my dad and Lana came to visit us. I have been so excited for them to see Evee. They had only been able to see her for 3 minutes in the hospital while she was in her little clear box, getting ready to be shipped to Rainbows. My dad (and mom) have since been saying that the experience of seeing Evee was a memorable one for she didn't seem like a normal newborn. She had a wise and powerful presence, with a piercing look that told you she was more aware. Regardless, I was excited for my dad and Lana to meet Evee. She is so social and loving, and I wanted her to capture their hearts like she has everyone else. I think it worked.

Mikey and William both gave talks in primary. Both of them were assigned the topic of how to prepare now for a mission. I had helped them write their talks, get the word order and sentence structure correct, but I had them come up with their own ideas. I was really impressed with their thoughts. 
Tonight we had our own Thanksgiving meal. It was good, food and Spirit were awesome. I was surprised how quickly and easily the meal came together. While we were finishing our meals, we did the traditional "go around the room and tell what you're grateful for". It was nice to reflect on the many blessings that have been given to us. I don't know how I got so blessed.
Afterwards, since the Spirit was so clear, we finished with singing some hymns and primary songs. Great evening.

Todd doing the honors of carving the turkey

Complaint

Roger: "Mom, it's not fair that just because I have extra-good skills at folding I have to do all the folding"

I feel the pain

Extra "Padding"

One thing I love about Grant is how playful he is and his great imagination. He can make me laugh and laugh.
He came up from the basement looking rather padded in his footed pajamas.

He informed me that he was "chubby" and danced all around (that was a sight).
Assuming that he had put stuffed animals into his pajamas, I was surprised when he unzipped his pajamas to reveal he had all sorts of hard plastic or metal toys (not too bright).

It did hurt him a bit when he fell down.

Never-Ending Halloween

I cannot be the only one that felt that Halloween this year was the Never-Ending holiday. It doesn't help that Halloween isn't my favorite holiday either.

Really, I'm not a fan of all the "scary" stuff, and giving my kids a bucket of candy is not high on my priority list.

We did the traditional pumpkin carving, which can be fun but nerve racking at the same time.

Hate having the boys with knives, but I do enjoy the toasted pumpkin seeds afterwards.

Because of the effects of Hurricane Sandy that we felt here, Trick-or-Treating was postponed in our city until Sunday. I was not thrilled about this for T-or-T would not be something I would categorize as a "Sabbath-worthy". I was sad to break this to my boys for they had been so excited to go T-or- T, but I knew that they would understand our decision to opt out (When we went to the zoo Roger told me that we shouldn't go to the zoo for they were open on Sunday....love his determination to support the right, but if we only frequented places and stores that were closed on Sundays, I'm afraid we'd be left to Chick-fillet and Hobby Lobby).
I was able to find out that a nearby town, that is in our ward, was having their T-orT on Saturday. With that I joined my friends.
They have a soup pot-luck before the T-or-T in their garage before everyone sets off.

Roger was especially excited to be able to go with his friend Carter. Mikey (so I heard) talked my friend's ear off, and William hung out with Todd as they walked around in a group.
Where was I, you ask? Staying somewhere with Evelyn? Oh, no, I had Grant.
Grant can be very shy, add that and the fact that we had to wake him up when it was time to go T-or-T and you have a disaster waiting.

He cried and cried. He did not want to go get the candy, even though most people sat at their driveways to hand out candy. He wanted me to do it.
It would have been easier to just quit and go home, but I knew it wasn't what was best. It wasn't about the candy, but the stretching that Grant needed to do. I had to physically force him up some people's drive-ways. He cried and looked away as people put candy into his bucket (looked extremely ungrateful). But by the time we were done, he was going to the door willingly, and was allowing me to be a step (not two though) behind him. It was a stretch for him, but I was glad he did it.
This year for Halloween we did an Avenger's Theme.....well, at least the 3 older boys did.

Mikey was IronMan, for he is very smart and always figuring things out
Roger was Thor, for he is honest and strong

William was Captain America

for he was small, but a true American hero
Grant was to be the Hulk, for reasons that are obvious, but he refused to be the Hulk for he wanted to be a White Ninja.

We went along with that for we figured that having the fake Hulk was not worth having the real Hulk around for (if you've ever seen Grant mad, you know what I am talking about)
Evee was a beautiful girl (as always)

and a bee

Glad that holiday is over!