She smiles every day

Enjoying every day with my little Angel :-) Love her so much! TOTAL blessing... I've been documenting her development and she smiles every. single. day! And it makes my day, every time!

 Okay seriously, how gorgeous is she? ;-) Wouldn't it be great if we all woke up looking so pretty?! Also, Max was excited to see her this morning ;-)

 

I love pictures after her bath before I put all her stuff back on :-)

 

 Pretty Girl!

I still get everything I ever wanted--Journal Entry Day 4 After My Daughter's Terminal Diagnosis

"Ever Since I found out she was a girl I thanked God every day that I was given everything I ever wanted. I figured I deserved it because of what I've already been through in life. This was my consolation. This was the bright side of my trials. After she was diagnosed I immediately felt stupid for being so grateful. And then one morning as we were driving to the hospital I had a paradigm shift. This can still be the bright side to my trials. It takes a little faith to see it that way, but if I really believe what I believe then God DID give me everything I ever wanted. I begged him for a girl. He gave her to me. And I DO get to keep her. And I WILL get to raise her one day. I DO believe I'll get to do everything I wanted. I'll get to nurse her. And dress her. And throw her birthday parties. And in a much better world than this. We will have it all. Sophie and I. And all of us. Jason says when we get to the other side our family will be so perfect we will have more gratitude that we chose it to be this way. I believe him."

"The Girls"

Sophia's Bed

When I was about 8 months pregnant with Sophia Jason set up her crib and I painted a wall in her room periwinkle, my favorite color :-)

When we finally brought her home from the hospital we had to take it down :-( I was heartbroken. I sat on the floor and cried :-( She won't ever be mobile and we needed the space to set up a bed so one of us can sleep with her every night. There is something sweet about having that bigger bed in her room though... It's how the kids come find her on their own lay with her :-) (And it's still her room, just without the crib ;-)

This picture of Michael was taken the other day. Tonight was super sweet too but I didn't snap a pic. He came in and asked if he could hold her because he hadn't yet today. I set them up on the bed and on my way out I peaked back. He was talking to her gently "Hi Sophie, how are you......", melted my mommy heart!

Bucketlist item number 2

Camping!!!

 

She smiled for Kristine :-)

I want to tell you about my friend. Kristine Bennett is a good friend of mine. One of my best in fact! The Bennett's were the first to welcome us to the neighborhood when we moved in 4 1/2 years ago. Kristine and I served the Young Women in our church together. She has always been inspiring to me. She has Parkinson's, but it has never stopped her from serving. She's been through a lot in her life... and she taught the girls from her experiences. She gave inspiring, and courageous Sunday lessons. She didn't let her Parkinson's stop her. She was patient with herself, and the girls learned from that. The other leaders and I always found it amazing that she could attract so much focused attention (from teenage girls no less!), with such a quiet voice. But the girls loved to listen to her. She truly has a gift. 

When I lost my Aunt Mary, (who I helped take care of, and who I loved very much) Kristine was there to help me through it. And when she lost her husband, I found it healing for me to help her go the the grocery store. She thought I was doing her a favor, but she was doing one for me :-)

Kristine inspired me by working diligently on her personal progress (it's a goal-setting achievement program for spiritual growth). She often asked me to sign off her assignments which were always typed up. She worked so hard on them. Today she informed me that she has finished :-)

Kristine has always been so thoughtful of my children. They love her. Whenever she would get in the car for one of our shopping trips she always asked Michael and Sarah about their little lives. And Max loved to talk to her too. He called her "titine" :-) One of Max's favorite things to do is play in the teepee that Kristine gave to him (it was hand-made for her son who is now 18). Also, she and Sophia have something in common. It's called dystonia (uncontrollable movements, it's neurological). They have a very special connection because of this trial they share. I was relieved when Kristine confirmed that dystonia is not painful (just annoying sometimes).
 
This morning we were out for a walk and noticed that Kristine was moving. We've known this day was coming. She's going up north to be closer to her daughter. She gave me one last message (she was also a diligent visiting teacher) and we cried a little. She walked over to say goodbye to Sophie in her stroller. I lifted her up so Kristine could kiss her. And as a final parting gift Sophia showed her  how she smiles (3 times!) :-) :-) :-)

Kristine we are going to miss you!

Kristine and Miss Sophia :-)

 

Breathing trouble :-( physical therapy, and Grandma's house :-)

Okay bad news first. Sophia has been wheezing intermittently for a couple days :-( And she's not sick :-( Also for those of you who follow close and may be wondering, I hadn't started her anti-seizure meds yet like I said I was going to, so it's not a side effect either. Every time something new happens I think "no! I'm not ready!There's so many things left on the list! We just barely got started!" To be clear---she's not going anywhere today, this is just a new intermittent thing. Part of her condition. But I do panic a little when I have to get used to something new.
Jason gave me a book about losing a child. You know what it says in the first few pages? Children die. We don't talk about the statistics, but they do. All the time. Want to know how much? 15% of babies born don't make it to their first birthday. 19% of parents will outlive at least one child. And 1 in 4 children will lose a sibling or a parent by the time they are 18. Well....it actually helps to know I'm not alone. This is not uncommon. At all. And one day our time with her will be up. I just sincerely hope I can do all I can and make the most of every day so that we can have lots of beautiful memories. I have a personal belief that not only will we get to keep those memories, but she will too. And in the spirit world, anytime she wants  to revisit the time we took her to see where Mom and Dad got married she'll be able to (and whatever else on the list we get to ;-)
Balancing memories with her needs also comes into play. She did have a hard time from being overstimulated at Jonah's graduation. And today was a big day with physical therapy. When she gets too much stimulation she gets jerky. I think we'll stay home until Sunday.

Today we went to see a physical therapist and he was talking about referring me to a speech therapist, who could maybe help with her swallow reflex. Maybe she can take some more bottles. When I feed Sophia through her tube I feel like a nurse. As her mom I'm the best nurse in the world of course, and I LOVE taking care of her :-) But when I can feed her from a bottle, I feel like a MOM :-) :-) :-)

The best part of today was going to Grandma's house! Sophia's first time! Yay!

Jonah Graduates!

Happy Day! Jonah our second oldest graduated high school today! Congrats kid we're proud of you!

Haha! Look how tired the kids look after sitting through the ceremony!

 Sophia Today...

P.S. I updated my post titled "Support" with pictures of my new friend and a link to her blog about her son Jett.

Unseen Angels

I'm sorry I haven't been posting every day with pictures lately. We had a lovely weekend out of town but we are still trying to recover 😉 My thought tonight is about hospitals. Jason thinks I'm weird but I've always liked hospitals. I feel safe and secure in a hospital. Whether I'm there for myself or visiting someone else. I've always guessed that there are many unseen angels in and around hospitals. I think that's why I like them. Primary Children's is especially crowded. We've been there twice. Once for Max and now once for Sophia. And I'm telling you, you can feel it from the parking lot. Once in the exam room and once in the cafeteria I was alone, but felt as if I were in a crowd. I believe there are many people on the other side, some who have been to earth, and some who are yet to come. And I think they sure LOVE on those little children in the hospital.

Anti Seizure Medication

The pediatric neurologist, who was amazing btw, does think Sophia is having seizures. We start anti seizure meds tomorrow. I now understand why anti seizure meds. The more seizures happen the more they will happen. But I feel good about this specialist. She understands and respects our desire to balance quality of life and longevity so I feel I can trust her suggested medicines.

We made it home and the kids traveled really well. But we are tired. As I watch Sophia drift off to sleep tonight I can't help but think about how perfect she is. She really is.

Quote for the day "Do Not Cry Because it's Over. Smile Because it Happened"--Dr Suess. I'm so grateful I got Sophia. In whatever way she had to come. She's perfect and I love her so much.

Update

On Thursday Sophia's pediatrician informed me that the results of the 3 day EEG show no seizure activity. They are guessing encephalopathy. So.....if she's NOT having seizures, that's great! If she IS but we can't catch it on a test, REALLY NOT GREAT.

We have our appointment with the neurologist tomorrow morning early. I will have A LOT of questions for her. I'll keep you posted. 

Coming soon...

Pharmacy fiasco

Maylee's "Fophie"

Meeting Auntie Holly, Uncle Nate, Uncle Ben & Aunt Kaila and cousins.

And pictures!

Support

Today I met a friend. We've been texting since the beginning (for me). Her son Jett had the exact same type of this same rare disorder. He lived to be 5 (and lives on). He passed away a couple days after Sophia was born. Actually on the day we were told of her diagnosis. It is SO amazing to hear about my new friends journey. I also met her sister and Jett's father. They were all so excited to meet Sophie and hold her. How incredible it felt to talk with people I suddenly have so much in common with. This is a really hard thing, but today I feel less alone. There is a mom out there who has been through what I am going through...and what I will go through. And she still has A LOT of light. That's REALLY reassuring! Tennille I can't wait to see you again! 

Here are some pictures we took at lunch...

http://fighterjett.blogspot.com/2013/01/long-due-update-1-year-anniversary.html

Here is a link to Tennille's blog about her son Jett. I've been reading it a lot as you can imagine :-) I chose to link this post because she writes so much like me in this one ;-)

Primary Children's

Heading up north tomorrow. Sophia has an appointment with a pediatric Neurologist at primary children's on Monday. Figured I'd spend the weekend up there visiting family since we have to make the drive anyways. You would not BELIEVE all the stuff I have to remember to pack. Of course if I forget something I can just just stop by Wal-Mart...NOT! If I forget something I'll be stopping by the hospital! No pressure! Don't worry ;-) I'm certain I've got all the important stuff 😣😛😀

Smiling :-) Singing :-) and Seizures :-(

Today was mostly amazing, and a little sad.

Amazing. Got one of her smiles on camera!

Amazing. Caught Max singing to Sophia :-)

Sad. I feel sure that she's definitely having seizures :-( We'll know by the end of this week if the test caught it; and once we do we'll probably plan to take a trip up to Primary Children's to find a pediatric neurologist.

Journal Entry Day 3

Here is my journal entry 3 days after Sophia's diagnosis. Felt like it took me 3 days to be able to make out words. It was all very Charlie Brown at first. Reading this in hindsight though, I think I must have been buoyed up by unseen angels from the other side. Because it sounds like I'm doing pretty good here given the circumstances.

"For the first time today I can actually follow a conversation that has nothing to do with our trial. I can hear what people are saying. I can laugh at a joke. I can sympathize with others situations. Feels good to be more normal. Who knows what tomorrow will be like. But for today."


Some pictures from today...

<---Sweetest pic ever

 She somehow got on her tummy on the bed today when I was out of the room! Also, yesterday, Jason swears she cooed :-) :-) :-)

Kids ;-)

So, lastly, let me tell you why the best part of my day was that my son cried :-) Michael was crying because he couldn't find his mothers day card that he had made me at school. He says he spent 3 days on it :-) :-) :-) Okay, when your 10 year old boy cares that much, it's a pretty good feeling!

Mothers Day

I had an amazing childhood. My childhood is riddled with memories of being outside with my mom. I remember her jumping on the trampoline with me in the dark, going on walks and to the park, picking blackberries, making "moonshadows", singing in the car (that's where she taught me to harmonize :-). In one house we had a laundry basket that dropped a "cage" into the kitchen. She would let us sit in there and pretend to be baby animals and she would bring us food. Two of my specifically favorite memories were when we were camping. Once at Fort Bragg, once at Mountain Lakes. She took me on a walk late at night and we looked up at the moon. I remember feeling like I knew Heavenly Father made this place for me. My mom read the Book of Mormon with us. I will always remember her very clever idea. She would keep the books of Mormon in the car and when we pulled in the garage after school we would read a chapter a day so we didn't forget. My testimony of that book and The Church of Jesus Christ of Latter Day Saints, is my greatest source of happiness. My knowledge of the plan of happiness is the only reason I'm not in total despair every day over knowing that I will outlive my beautiful baby daughter. My mom gave me that.

My mom is an equally wonderful Grandmother. She loves spending time with my kids. P.S. now you all know where Sophia got her red hair!

ALSO this Woman knows how to serve! Just last Monday my Mom was here to help me. I took Sophie to the doctor and she watched Max.
-First if all my mom showed up to the house with Sophia's outfits. She'd spent the weekend taking out zippers and putting in buttons so all her cords have somewhere to come out.
Then in the 3 hours that I was gone my mom...
-Cleaned my bathroom
-Did the dishes
-Washed my kitchen sink
-Did laundry
-Grabbed my list from the fridge and went to the store (subsequently picking out her own mothers day present on the list!)
-Put dinner in the crockpot
-And probably more that I did not notice.
All this, not to mention the fact that at my request after Sophia's diagnosis, she pulled her trailer into my yard so that whenever I need my Mommy, I can ask her to come stay.

Also. She writes us lullabies. Every one of her 5 children had their own special lullaby that she would sing us off to sleep with. She's written one for each of my babies as well. Here's the one that she wrote for our dear Sophia. She also bought me this frame, I just need to find the PERFECT place to put it.

"Angel Sophie"
Gently attending
Angels placed you on earth
With family to love you
From moment of birth
Precious Sophie
An angel of our own
We hold, kiss, and comfort
Until we have grown
Able to gift you
Back to your Heavenly home

Happy Mothers Day Mommy. I sure picked a wonderful Mom! I love you.

Sophia Says- Don't be afraid to let your bad relationships change for the better

A couple of days after Sophia was born I still hadn't told Michael and Sarah she was sick. I felt I needed to tell their father, my ex husband, first. Grrrrrrrr-eaaaaat, I thought. He and his wife met me at a park near the NICU while my husband stayed with Sophia. I didn't know what to expect. I mean, we'd certainly had it out a few times in the 7 years we've been divorced. But this was bigger than all that, I hoped.

We sat on a bench while the children played. I began by telling them that every fight we'd ever had seemed pretty stupid right now.....and then I spilled the beans about Sophia. They both fell on me. Literally. They both just hugged me. I knew it was sincere. We cried.

I figured when I told them my baby was dying, that I could at least count on them helping me support Michael and Sarah through this. Because for all our differences, one thing we have in common is that we love those kids. But I did not expect the immediate love that they both showed for ME. 

In the days and months that followed I found myself telling people that my ex husband's wife checks up on me just as much as my friends do! And things with my ex had gone back to a good place as well. A place we had been before, for a time, but not in a while. 

Today I opened up a wonderful Mothers day present from Sarah and Mari (her step-mom). A lovely song she had written for a friend that lost a son, adapted for Sophia 😊 They had practiced and recorded it together! 💜

"Watching over you, both night and day
I'd give anything to take your pain away,
But I made a choice....I chose you.

I lived close to your heart, as close as I could be.
I knew the sound of it's beat, I knew the song you sang to me,
I feel no pain, only peace.
Let me share it with you in this letter...love, Sophie

It wouldn't be easy, this we knew.
But we promised we would pull each other through.
Though I wanted to stay...stay with you.
Just for now through heaven's arms, I'll comfort you.

I lived close to your heart, as close as I could be.
I knew the sound of it's beat, I knew the song you sang to me,
I feel no pain, only peace.
Let me share it with you in this letter....love Sophie

I live on...closer than you think.
Through Heaven's arms...I share His peace

I live close to your heart, as close as I could be.
(I live on...closer than you think)
I know the sound of it's beat, I know the song you sang to me,
(I hear your heartbeat, I hear you sing)
I'll ease your pain, share His peace.
(I feel no pain, only peace)
Let me share it with you in this letter....love Sophie"

Such beautiful lyrics. I cried and cried. In a good way. I could feel the Holy Ghost testifying to me that it's okay to love people you wouldn't expect.

My message today is this. We all have relationships that suck at times. And we've all leaned on the people we love when those relationships aren't going well. But that doesn't mean things can't change. If someone is showing you kindness, take it. Accept it and show it in return. 

Don't be afraid to let a relationship that's hard, change for the better. It doesn't make you a liar. The people you love will accept it too. And if, for some reason, things slip the wrong way again, don't worry. Your people will still be on your side. 

There's plenty of love to go around in the world. It's okay to let the people you love, love your ex and his wife too. It doesn't mean they love you any less. But we should already know this, because we already do it with our kids.

I'm not saying you have to walk freely into each others houses, kiss each other on the cheek, go on family vacations, or get together for the holidays like they do on TV (if that doesn't suit you). Do what you're comfortable with. But do it with kindness. 

We all have a past, individual, together. Satan doesn't want us to change. But Heavenly Father does. Heck, if there's someone who WANTS you to get along, It's your Heavenly Father and Jesus Christ! 

And this doesn't just apply to your ex, any bad relationship will do ;-) If you can't bring yourself to be put in a position of potential disappointment, then don't. But allow yourself to take kindness and give it anywhere you can. Think about what I'm saying. Evaluate your relationships and see if there is room for an increase of love, or patience..... benefit of the doubt, or whatever you can give. And I promise you, you're life will start to feel "lighter". 

Even if a difficult relationship only gets a "little" better it just might make your life a LOT better :-) Take the risk. It's worth it. And you may even find JOY in relationships you never expected :-)

Sophia's life has taught me so much already. I am so grateful for her. She is changing me for the better every day. And every day I will strive to do right by her. I love my little girl.

 Thank you Sarah May (and Mari) for the beautiful mothers day gift. Sophia and I will treasure it forever :-)

Rolling

I thought that the hardest thing I was going to do in 2017 was give birth without pain medication. After the holidays I prepared solely for that and anticipated my reward.

 There are many things I have/am mourning since Sophia was born. We won't get to raise her :-( (in this life anyways. Mormons believe that when children die before the age of accountability, which is 8, that righteous parents will get to raise their babies in the next life). Max will be alone every other Christmas :-( I won't get to see her walk or talk (again, in this life) :-( Sarah had finally got a sister in our family :-(

Here's one that didn't hit me right away. My daughter is severely mentally and physically disabled. The NORD says so. No motor or mental development. The more I notice it in her, the more I notice people with disabilities in the world. The more my heart goes out to each and every person who is disabled. (Side note-lugging her oxygen around has made me ever so grateful for handicapped parking, entrances, bathrooms etc. I navigate my world through handicapped eyes now and I'm so thankful our society is so conscious of us)

 With Sophia sometimes she has good tone and sometimes she's floppy. Sometimes she'll look right at you and sometimes she just looks up. Sometimes she drinks a bottle, and sometimes the suck swallow breathe reflex just isn't there.

But today she did something new! :-) :-) :-) The pediatrician says as long as she is doing new things there's no need to go on hospice yet. So every day she does something new is a GOOD day. On those days I'm high as a kite and feeling really strong. I usually don't cry on those days :-) Today she rolled from her back to her side. All by herself! Love that little miracle girl. 

 

And look how chubby she's getting! 

More professionals....

 p.s. I finally added photo's to the may 8th post, and fixed my late night grammar, if anyone cares to look back ;-) There's another really pretty professional one of Sophie.

IF.......THEN

There was a time in my young life when I was trying to give up a bad habit. Here's how I did it. I did a little experiment every time I wanted to. Every time I wanted to I would say a prayer. And I told myself IF the feeling didn't go away in a certain amount of time, THEN I would go ahead and do it. At this time in my life I hadn't been to church, or said a prayer in a long time. So I was experimenting with prayer. IF God was there for me....THEN I would consider letting Him back into my life. Well it worked. Every time. And I was able to kick the habit. And I kept my end of the deal too 😉

I think I may try another IF.....THEN experiment to help me through the loss of my daughter (when it happens). This is how I came up with it...

I have a quote from the candy bomber written in marker on my mirror. One night, soon after Sophia's diagnosis, we returned home from the NICU. Jason read the quote and said it was a good one for us to keep in mind during this time. It goes like this:

"The only true feeling of worth a person has is when you get outside yourself and when you help somebody else. Following the Savior's example to the degree that one is able to do that is the only way to happiness."

And so I came up with an idea. After Sophia is gone and I am more sad than I can possibly imagine...I wonder if the only thing that will temper the pain will be to get out of myself and serve others constantly. So that's what I'm going to try. I imagine, for some time, it will be quite robotic....like.....just forcing myself to put one foot in front of the other again. But that's my plan A. And after a LONG while IF that doesn't work....well THEN maybe I'll try wallowing in self pity 😝

Field Trip Today...

More Professional's...