And Then There Were Angels

Today was another craptastic day if I’m being honest. My days off lately (tues/thurs) have been much worse then work days! Ai yi yi! A to do list a mile long, the cold that I finally got from Riley, surprising news from Riley’s new endocrine doctor, a doctors appointment myself, a social media friend who posted something horrible about special needs children that I just can’t shake, and bad news at Rileys 6 month speech therapy evaluation. All day I didn’t know if I wanted to scream, cry, sleep or eat my feelings. I may have had Chinese for lunch so guess which one of those healthy coping mechanisms I went with? 

Well all the whining I did today was for nothing because tonight was so utterly fantastic that I don’t even recall why I would have complained in the first place! But before we continue and I share about our phenomenal night I must document two things mentioned above. First Rileys endocrine doctor called to give me the results of her bone scans. Good news is her bones are not aging too quickly. Bad news is her predicted height is only 4’2” to 4’4”. The news totally caught me off gaurd and so did the fact that the doctor wants to discuss growth hormones at her next visit. But after I processed it all I realized that tiny Riley always being tiny may not be a terrible thing. And her speech evaluation did not go so well this afternoon either. The hour long look the evaluater gets of Riley based on standardized testing scales (lame) shows Riley may have regressed a little. Since their tests show she has made little progress in a years time, the therapist thinks her insurance may deny services for a while. Why insurance wouldn’t see the very obvious need for a nonverbal child to have speech therapy is beyond me! But I guess I will fight that fight when we get there. Now onto the night. 

So amidst the rain I was feeling sorry for myself because of the craptastic day. AND THEN CAME THE ANGELS! 

In this case the Angels are the members of Rileys new baseball team which is very appropriately named the Angels. Today was the beginning of fall baseball and within 10 minutes I was SO glad that I finally listened to my friends and signed Riley up for the Spring/Klein Superstars! For the next 7 Thursday nights the Angels will play the Giants at Klein Park fields. They will be the cutest bunch of baseball players with the greatest bunch of devoted parents, grandparents, friends and helping buddies ever! 

Riley was sure in heaven tonight! She got a new shirt and one that was matching with her friends including Lane who is one of her besties but goes to a different school now so they haven’t seen eachother, Noah from school and Trip and Haley that aged out of Mahaffey this year, two new friends and Coach Tiffany. Riley LOVED being on the field running with her friends and getting lots of help and attention from her sister! Keagan was an absolute angel herself as she helped Riley do it all and didn’t miss a thing! She was SO sweet with Riley and all the other kids on both teams! I was really so proud of both my girls tonight and was so inspired by everyone there that I thought my heart would absolutely burst! 

The sweet baseball players “practiced” including kind of warming up and playing a little from 6:30-7. It’s very informal, non-competitive and awesome and at 7pm the game started. Each team takes a turn being in the outfield or letting all of their players have a turn at bat. They then run one base at a time and the last player up hits a homerun! On her second time at bat Riley hit the homerun and absolutely beamed. Amongst the cheers she stopped mid way between 3rd and home to smile at the adoring fans and make sure everyone was watching. All while Keagan is running along side her and encouraging her of course! Seriously my cheeks hurt from smiling so big! Man we are SO, so blessed and SO, so grateful!! 

Who knew baseball could turn such a bad day around like that! At least for a while, I think Thursday’s are going to be my new favorite day! Because that’s where the Angels are of course!  

Keagan and Riley, You are Loved!

I needed this message and this entire amazing talk last Saturday so maybe one day my girls may need it too. Keagan and Riley I pray with all I have in me that you come to know this to be true! 

"Dear sisters, why should you surrender your happiness to someone, or a group of someones, who cares very little about you or your happiness?

If you find yourself worrying about what other people say about you, may I suggest this antidote: remember who you are. Remember that you are of the royal house of the kingdom of God, daughters of Heavenly Parents, who reign throughout the universe.

You have the spiritual DNA of God. You have unique gifts that originated in your spiritual creation and that were developed during the vast span of your premortal life. You are the child of our merciful and everlasting Father in Heaven, the Lord of Hosts, the One who created the universe, spread the spinning stars across the vast expanse of space, and placed the planets in their appointed orbits.

You are in His hands.

Very good hands.

Loving hands.

Caring hands.

And nothing anyone ever says about you can change that. 

Their words are meaningless compared to what God has said about you.

You are His precious child.

He loves you."

Dieter F Uchtdorf, “Three Sister’s” General Women’s Broadcast, September 2017

Lets Be Honest

The people that love us the most are supposed to be brutally honest with us at times. Those that truly know our real selves and see our strengths and weaknesses, love us enough to call us out on our crap, at least they should. Well I’m lucky enough to have my sister and my bestie Taryn to do just that. And they sometimes call me out on something that comes second nature to me. I like to think that I just have a natural tendency to put a positive spin on things. I’m uber optimistic, a glass is more then half full kind of gal. But those two will often read a blog post and maybe roll their eyes, out of pure love and concern for me of course. I get a whole lot of “you make it look and/or sound too easy” and “you don’t really let people know how hard it really is.” And then I swear to them all day that I don’t do that on purpose at all! Lets be honest, it is just the way the Lord made me. 

But then there are days like today, where I am tired, vulnerable and feel like whining. So let’s give my sister and bestie a blog post they can smile at, shall we? 

This! Is! So! Hard!

Like REALLY, really hard! 

I’m talkin about this single mommin thing of a special needs child AND her sister. That is the thing that is particularly hard today. And it’s SO hard! Do you like that Sa and Taryn? 

Riley has a little cold and her asthma started to act up last night. I did my regular routine and completely freaked her out with her steroid and rescue inhalers before bed. She was exhausted after the crying over that and quick to fall asleep by 7:30. And that’s when I cross my fingers, toes and eyelashes that she sleeps all night long. But I must have given her too many steroid puffs, gosh darn it, and it backfired big time. By 10:30 she was up and ready to party. After some discussion, Nana was SO sweet and a HUGE blessing to keep her until 2am so I could get some sleep. Then from 2 to 5am Riley and I were back and forth in the recliner, in front of the tv, in the recliner, on the floor, in the high chair, and in the recliner. I tried everything I could including begging and a few tears to get her to sleep with no success. At 4 am the girl devoured almost 18 silver dollar pancakes like a grown man! She just kept puttin them away and asking for more as I could barely keep my eyes open. I finally rocked her to sleep like a baby at 5am. That gave me almost 2 hours of sleep before I woke Keagan up who was snoring quietly on the couch. 

I am a girl who needs a good amount of sleep to not be a total beast, so I knew today was going to be rough, especially with what we had on the calendar. On this crazy sleep deprived day we did 4 doctors appointments, 3 x-rays, 2 trips to the pharmacy and 2 flu shots. That leaves for one tired momma even if I was working on a full nights sleep. 

Riley had her first visit with the Endocrinology clinic at TCH west campus today. I just felt like we didn’t already see enough specialists at 11 so why not add one more? But really it was because of my huge concern over Riley’s arm pit hair growth and occasional body odor. That is unusual considering she is extremely small and only 8. Her new doctor and I talked about the possibility that Riley is beginning premature adrenal puberty but it will require more testing of course. It has possibly been spurred on by all the medication Riley has taken her entire life. If that is the case, which it is likely to be, then it will need to be addressed as it could have implications on growth and other things. I’m really not sure how many more diagnoses or challenges Riley and I can face. 23 sounds like more then enough to me already! 

After that draining appointment, we were sent to radiology to wait to get X-rays of her hands. Apparently the bones in the left hand can reveal a lot of information about the status and “age” of your bones. Who knew? I am really hoping Rileys bones don’t reveal that they are aging too quickly. At that appointment I was absolutely amazed and saddened at the same time when the X-ray tech called us back. Riley walked right up to him and held out her ID bracelet that she had been given by the front desk so he could confirm her name and birth date like they do at every single TCH appointment or procedure. He immediately looked at me with surprise and said “she must be a pro at this!” I replied with “she has done this a couple hundred times.” Part of me smiles because my baby is so stinkin smart and part of my heart breaks because my baby has been thru SO much for that to be second nature to her. An 8 year old shouldn’t know she needs to do that! She just shouldn’t. 

We worked it out but that left hand with its clench and twist of cerebral palsy was tough to X-ray. And then after thankfully a relaxing lunch Riley and I headed to Dr Reed’s to check out her cold, asthma and get a flu shot. Man we love that Dr Reed! So why not pick up Keagan and bring her back to get her flu shot, which she was very unhappy about but didn’t really fight me on thankfully as I didn’t have the energy to argue. I am so happy to report that both girls are SO brave and didn’t even cry for their shots! What rockstars! Then after a second trip to the pharmacy for the day, I was the one who wanted to cry. But there was still homework to do, laundry to fold, dishes to do, dinner to feed Riley (so thankful Todd cooked it) and little people to get ready for bed. Now I am physically and emotionally spent and want to sleep for days! 

Riley with the hand sewn pony a volunteer gave her in radiology today.

The goods from the pharmacy today. It takes a lot to keep all the meds straight twice a day!

A sample of what my sweet girl takes twice a day wether she wants to or not, wether she is feeling cooperative or not. This does not include any meds to address if she is sick.

Lets be honest, although the coordinating, scheduling, driving, explaining, directing, questioning, advocating, complying, and understanding part of being a special needs Mom is ABSOLUTELY exhausting. It’s not even close to the hardest part. The hardest part is the worry, the wonder, the what if’s, the what nots. It’s the ok now what’s, the consoling of tears, the decision making and the I have to put my baby, the most precious thing on earth thru SO much! I can’t do it for her, I can’t fix it, I can’t take it away. No matter how hard I try, and I do try! And it is doing it all alone. Yes I have a wonderful village who loves me and loves my babies. But I still do this completely alone. And again I say, it is SO hard! So, so hard. 

But then at the end of the night, as I’m almost in tears because Riley is in full tantrum tears because I don’t want her to wear her Belle costume to bed as it will wake her up, this happens. 

Keagan scoops up Riley and makes her oh so happy as they watch the movie together. And I am reminded just how incredibly blessed the three of us are. And we read our scriptures and feel the peace the Spirit brings. And I say my prayers and am totally reminded that we are NEVER alone and can face anything with the help of our Heavenly Father! So I can do this! We can do this together! I just know it! But we need a little sleep first.

And now I am back to being positive.  Who else saw that coming? I bet Sa and Taryn did! I really just want to wrap this up and finish this awful day so I can go to bed! But I can’t do that without looking on the bright side I guess. Lets be honest, when you see this picture can you blame me?!

Love/Hate

I have a love/hate relationship going on with several things in my life right now. Topping that list are therapy and third grade. Man I love em both for what they do for my babies, but I sure don't like em all the time. 

Riley has been doing speech, physical and occupational therapy since she was 10 months old! That means we have had 8 years of weekly appointments that are exhausting for both of us. She has had MANY different therapists over the years and some have been better then others. Being in therapy weekly has done AMAZING things for my sweet, hard working girl. So I obviously love the progress she makes because of it and I really love her current therapists of Miss Wiltse and Miss Leslie. But man is it exhausting and hard to keep up with right now for both Riley and I. I hate that part. Burnout is real! But continuing to go is what is best for her, so that is what we will continue to do. We both just may not always love it. 

I have a love/hate relationship for 3rd grade for different reasons. From 2nd to 3rd grade has been a big jump with a lot more homework and we will face the big, ugly STARR test this year. Keagan and I have had a couple nights of doing homework together that didn't go so great with some pouting and sassiness. We got thru it all but unfortunately forgot to fill out her reading log last week and she missed the Friday homework party. When she shed a couple of tears and needed lots of hugs after school it was clear she learned a good lesson on that one! 

But the real reason part of me hates 3rd grade is because it means my babies are SO stinkin old! Like really old! I even taught Keagan to shower on her own recently for heaven sakes! I have tried grounding them from getting any older but they just aren't listening to me for some reason. But the good news is they really have incredible teachers, cute classes and amazing opportunities again this year. So if I'm being honest, the love definitely out weighs the hate on this one. 

Mrs Merrbach is doing great with Keagan's dyslexia intervention program every morning before school. And she sends weekly detailed emails and posts tons of pictures on DOJO which you know is the way to my heart! Both Keagan and I absolutely love her! She even recently sent me an email about how happy she is to have Keagan in her class because she is a great leader and has a heart of gold! Keagan also has great 3rd grade classmates including her bestie Avery, so there is a lot to love there! 

As for Riley, this  blog is full of reasons we love Mrs Merillat, Mrs Brown and Mrs Akers who love and push her every day. Thank heavens she still has them all for 3rd grade! One of my new favorite reasons to love them was the cute fireman role play they did last week to celebrate first responders day using squirt guns to put out "the fire" and then enjoyed popsicles afterwards of course. Even better then that is the legitimate academic work that Riley brings home every single day showing how much they are teaching and pushing my baby! I am SO thankful for that!! Thankful enough that I was more then happy to spend last Monday night at a Klein ISD school board meeting with both girls and our friends where Mrs Merillat was being honored for the incredible teacher that she is! I don't know anyone who deserves the recognition more! 

And really there is SO much more to love in our lives right now!! We honestly don't hate much! 

I love the school wide art project that the amazing Mrs Thompson does at the beginning  of each year that both girls had a hand in.

I love two incredible examples as strong women who love my kids and make them both want to be principals when they grow up, Mrs Petross and Mrs Hernandez. 

I loved the awesome General Women's meeting last night where I was totally inspired by President Uchtdorf one again! 

I love that Riley LOVES to the dishes now, especially at Sa's house! She's such a cute little helper! 

I love a fun birthday party with another set of sweet twins. Keagan was super brave on the rope swing and Riley was super terrified of the dolphin mascot. 

I love that Keagan brought home her library book that was a book I read so much out of when I was a kid! And that she is enjoying us reading together a lot more! 

And the list could go on and on. I definitely hate the two migraines I had last week, but I love the fun impromptu Sunday we had hanging out with Kellie and visiting the Ginn's together today. And the long list of loves also includes that we had a fun dinner at the Ginns to celebrate Kirks birthday recently, and that I've lost 15 pounds! And I absolutely LOVE my new mini van that I have wanted for years and finally got a GREAT deal on! It's a gorgeous Honda Odyssey that both girls love too! I have wanted sliding doors and a lower frame for years which will help Riley be more independent getting in the car. Along with the new car comes Keagan not sitting in a booster seat any longer. See now we're back to them getting much too old! Yes I hate that but there is so much more I love! 

I sure love these girls and the beautiful life we live together! Just minus a few hates, that's all. 

Momma Fears and Mental Health

I struggle off and on with the beast that is anxiety. I come from a long line of strong, independent, beautiful women who also just happen to face some form of mental health battles. Two women I love deeply are in the thick of this fight right now and it is agonizing to watch the struggle. They are neck deep in it as we speak and I usually just wade in the real shallow waters of it. But for the last week and a half I've been up to my knees with anxiety and I sure hate these waters! 

I think it began with the heightened stress of hurricane Harvey and all that entailed. But my anxiety surged with the sudden and MUCH too early passing of two sweet special needs children whom I know through Facebook support groups. One little boy had the same rare brain malformation as Riley does, Polymicrogyria. That just hits WAY too close to home. The other had her own health struggles, but both of them went to heaven because of probably my biggest fear, SUDEP which is Sudden Unexplained Death by Epliepsy. There is a million things I worry could happen to my babies but SUDEP is the worst!

These two children were playing, laughing and living one day and then it sounds harsh to say, but didn't wake up because of the horrible disease of epilepsy. No matter how I try to spin, slice or reanalyze that, it still leads me right back to anxiety! How could it not? Riley just recently had her seizure medication increased because of an escalation in seizure activity. Hopefully that helps and her seizures stay under control! But let me tell you this. Epileosy does not play by any rules. So my anxiety has filled my thoughts, distracted me from a lot and probably altered my behavior some. Unfortunately it works that way. 

There are a lot of things I do for my anxiety. I count my blessings, I breathe, I talk to myself, I take my daily anxiety medicine, and I pray my guts out! Today the swirling thoughts in my head were relentless and then I read something that calmed some of the waters. I really appreciated these quotes and thought about my blog containing what I hope Keagan and Riley will read one day. My constant prayer is that they never personally know anything about struggling with anxiety or other mental health issues. But  if they ever do (please no Heavenly Father) maybe something that helped me today will help them! This was said this morning by President Worthen at a BYU devotional.

“My message today focuses on one of the most oft-repeated, and yet most oft-overlooked and ignored commandments. By my count, this commandment is repeated 78 times in the scriptures. The commandment was the first thing spoken by the angels who announced Christ’s birth to the shepherds outside Bethlehem. It was also the first thing spoken by the angels who announced Christ’s resurrection to the women at the empty tomb. The commandment was conveyed by the angels who informed Mary and Joseph about their roles in the Savior’s mortal ministry, and it was part of the message of the angel who appeared to Zacharias to reveal the upcoming birth of John the Baptist. The commandment is repeated in at least two of our LDS Hymns. It is a commandment, found so frequently in the scriptures that we may not recognize its profound importance, especially for the times in which we live and the stage of life in which, you students find yourselves. The commandment is a simple two-word injunction: ‘Fear Not.’” 

“Whatever the circumstances you find yourself in, know, with assurance, that you can succeed. You are more capable, more talented, and more faith-filled than you realize. More importantly, you are more loved by God than you realize. God lives. He is our Heavenly Father. He has placed you on earth at this time and in this place because He knows you can succeed, and that you can help others succeed in this particular setting. May the heavens open to give you glimpses of that truth and that destiny.”

The heavens did open a little for me today to receive this message. Hopefully I can keep it in my heart and swim back to the very shallow end of the anxiety pool. I'm much more comfortable there. And I pray my girls never have to get their feet wet! Hopefully they can "fear not!"

Weekend Warriors!

What an incredible weekend we just had! I am still feeling SO grateful that everything came together to create 3 days that will be remembered for a life time full of simple cherished memories with my family. 

Every year the Ginn's all try to get together for Thankgiving, but unfortunately this year it isn't going to work out. So that is why it was extra spectacular that the Chicago Ginn's decided just earlier this week that they wanted to be a part of the clean up effort for hurricane Harvey and bought tickets to town! Of course we terribly missed our beloved Sami who is back in Idaho at school! But the Chicago Ginn's visit and the opportunity to not only spend time together but to work and serve together was truly something special. And the serious laughter this weekend was just the delicious icing on top! 

Vicki, Kate and Tess got here Friday afternoon so my girls could not get home from school fast enough! Immediately once my girls were reunited with Tess they disappeared to play and that was the beginning of not seeing them a whole lot this weekend. And of course Campbell joined the bunch as soon as possible so the little girls were all back together having a ball! We all met for dinner at Olive Garden to chat around food like we do best. The kid table was sure rowdy so I was happy to be with the adults! Then Campbell, Addie and obviously the Chicago Ginn's with Tyler and Maya getting in late stayed with us. The 4 little girls sleeping on the floor in the playroom was precious! 

Sarurday was the focus and highlight of the trip. It was time to get to work serving others who were not as lucky as we were in being spared from hurricane Harvey's wrath. Todd, Lisa, Addie, Tyler, Vicki, Maya, Kate, Kirk, Kari, Evan, Kennedy, and Kari's sweet nephew Carson from Cali all sported those yellow Mormon Helping Hands shirts and headed to a sweet woman's house in the city. Mrs Mary was flooded 2 feet throughout her whole house and needed it all mucked out. They all worked SUPER hard and I am SO proud of those teenagers for truly giving of themselves. Meanwhile I was at home and in charge of what became the glow stick crew. They had serious fun playing and then were very happy to bring lunch to a work crew from our Stake and then our family work crew who had definitely earned a good lunch! 

After a lot of hard work and lunch we said goodbye to Mary and headed to a woman's trailor in Sa and Todds ward. The flood waters didn't get inside her trailor but soaked all of the insulation that was underneath the trailor so it all needed to be cut and pulled out. That was seriously tough work in a filthy confined space and the Ginn family rocked it! I was seriously proud! They also worked very hard and pulled up flooring and cabinets in her 5th wheel but I took the little girls and left early to deliver some Home Depot gift cards sweet Tess had received from neighbors in Chicago at her lemonade stand for hurricane Harvey relief! We delivered some to the incredible Willis family whom we love and they cried they were so thankful. So that was a great experience for the little girls to see while the others were all still working their hineys off! 

After everyone showered and cleaned up we met at our house for our typical Tex Mex dinner of fajitas from Lupe. As we waited for Tyler and Vicki to pick up the food we played Kirks typical question game and the teenagers played spoons, such classics! Dinner was loud and full of conversation, laughter and good food otherwise known as the perfect combo. After dinner we all sat for hours in the family room laughing til our stomachs hurt. Mostly everyone laughed at me doing stupid human tricks, the Indian leg wrestling, chicken fighting, and arm wrestling battles that were spontaneously sparked. The highlights were me teaching Kate how to gurgle like I've done since I was her age (I was SO proud), Kirk and Tyler leg wrestling, the one liners from so many of us cause we are a seriously funny bunch, and my windmill arms that had everyone in stitches. The love and laughter in that room was priceless after a long day serving shoulder to shoulder. I have no doubt Pakka was there and completely thrilled about it all! I really didn't want it to end! But the night did end with me watching half of Pitch Perfect 2 for the first time with Vicki, Kate and Addie and with Keagan and Tess leaving Kate and Addie a very special gift on their pillows! I about died when I saw it was just the heads of all our barbies! See? We seriously are a crazy but absolutely hilarious bunch!

After some sleep walking in the night by both Keagan and Kate, sweet Vicki and Tyler gave me my very favorite gift EVER- they let me sleep in! I didn't even realize it and was amazed at 9am when Keagan woke me up! Tyler made breakfast and we created that perfect combo again (conversation, laughter and good food) until unfortunately the Chicago Ginn's had to go home. Saying goodbye is never easy but me giving Tyler a kiss on the cheek and totally freaking him out made me not as sad, especially about Keagan and Tess who are such special cousins saying goodbye! 

After the house was quiet again Mrs Riley feasted and just wanted to sit in her high chair for literally hours! She refused to get out because she was probably so busy playing all weekend that she didn't eat and sleep nearly as much as she should have. Keagan and I immediately missed all the fun but got the house put back together and everything ready for the busy week ahead. 

I can't remember a better weekend then this one then I have had in years! What a blessing it is to be a member of this family who works and laughs together! We are totally dysfunctional, totally have our drama, and are all totally different. But in the end we love eachother good and what more can we ask for? The first thing that comes to mind would be more weekends like this one and ones that include Sami so we are ALL together! I think that would top the list of all these weekend warriors!