Mama Slade's Epic Day Off!

Monday is one of my days off. I work part-time at the church a couple of mornings a week. Sometimes my Mondays just fly by and this Monday was one of those. About halfway thru the day, my mind wandered, thinking "This is a day of rest"! Days off speed by VERY quickly for this busy mom of three. Here is a peek into my Monday. Come along for the ride! ;-)

6:00 am- I sleep in on Mondays. (Yeah!)  Bowen brings coffee to me in bed. (World's best husband!)  I have my devotion time for 30 minutes.

7:00 am- Up and at em'... Oh wait, Tommy wants to snuggle for "5 more minutes". A year from now he may not want to, so I grab this moment, him in my arms, and enjoy.

7:15 am- Breakfast for the boys is on the table. Tommy has attention issues so it takes 30 minutes to get him to eat, and that's on a good day. This next hour is one of the most pressing times of my day. Keep in mind that backpacks are pre-packed the night before and clothes are picked by him. (2 options) Lunches are as ready as possible. All he has to do is eat and get dressed. Today it took 48 minutes.

7:50 am- Dad and Ethan leave for patrol duty. I throw my hair in a ponytail and decide to skip my date w/ the bridge as the day is looking REALLY full already.

8:00 am- I load the car and take Tommy to school. Because of his disability it is dangerous to let him out in car line, so every day we walk him in. He really wants to be a big boy! The last couple of weeks he argues daily with me that he is big now and can walk in himself. If he ends up being a lawyer, I would want him to represent me. He sure can argue his case. But this mama wins this one ;-)

8:30 am- Run back home to eat breakfast, pay bills, balance check book, grab returns to go in town. I loathe the driving but do all of them at once to limit drive time. It's 25 minutes to Michael's, Target, and the Dollar Tree. Oh, and I grab the dog to take to her to the vet for MY first haircut w/ her.
Getting this all ready to go took an hour and a half. I managed to throw in  a few loads of laundry while home, too.

10:00-10:15 am- HERE IS WHERE THE FUN BEGINS.... Petunia LOVES to run errands with me. Keep in mind, I have never taken her "out" of the car. So we get to the vet for her haircut, and I jump out of the car. (Ponte Vedra Animal Care) Out she jumps behind me. Then, as I open the door to the vet everything changed. She made a mad dash between the cars. YES!!! By now, I am frantically trying to catch her as she is sliding under and around cars. The next thing I know she is in some older man's car. Did I mention it was a beautiful Mercedes? YEP! Jumped right in and wanted him to rescue her. He is laughing hysterically at the sight of me. (I can't even imagine how hysterical I must have looked!) He then manages to inform me that "a leash would help you keep her put"... No kidding! I did not say this, but it definitely ran through my mind. Instead, I stammered "I am new to this dog thing. Thank you for the advice." I look up and the vet office staff girls are cracking up at the whole scenario. Note to self: "Go to Target today and get a leash"! I finally get Petunia in and settled with the groomer and am off to town. Worship music blaring (OF COURSE!)... Thinking "what have I gotten myself into".

11:00-1:00 pm- I get to the Dollar Store for the thrifty side of me to buy tissue, tape, boxes, bows, ribbon, treat boxes, etc. They will all be picked over in a couple of weeks. I buy now, to avoid traffic and driving... Next stop: Michael's. I have a rare (very rare) desire to be crafty. I saw this great time out jar and went to get the supplies. Check out my facebook page from earlier to see what I did. Next stop: Super Target. I didn't forget a dog leash (how could I?!) comb and brush. She was matted and we needed a brush to use with her daily. On the way home I grabbed Bowen's shirts at the dry cleaner. I'm glad I had a coupon and it was only $8... Oh happy day! I then hit up the post office. The debit card machine was down. Bummer! They only took checks or cash. Remember earlier I said I paid bills? Guess where my checkbook was? Not in my purse. I paid $2.35 in change... The looks I got from the VERY long line left my mind pondering the people around me. I run into Tuesday Morning next, since I did not have kids and never go in there.

2:00 pm- I get back to the house and have lunch. My prayer partner called and we hit the ground catching up and praying. I love this woman of God. She knows me, believes in me, prays for me, challenges me, provokes me, and know how to speak tenderly but honestly. We understand and know each other's hearts, desires, and convictions. The next thirty minutes were a treat in the midst of the busyness..

2:30 pm- Another friend calls and offers to grab Ethan. Thank you, Jesus. I was trying to figure out how I was gonna be at Landrum for 3:00pm pick up, at Rawlings for Ethan at the same time and home for the bus at 3:15pm. Moms: Let me know if you figure out how to be multiple places at once!

3:00 pm - I pick up Beth from after-school practice for Florida Junior Thespian Practice. Districts are in one week! Now I am rushing back to the house in hopes of grabbing a shower before having to be at her Science Fair Awards Ceremony. Beth is rambling that they did not place, so maybe we should skip.... I am thinking awesome thoughts, obviously! Then, I am reminded that her partner SAVED the project last week. Beth forgot a deadline and was sick. It happened to be the day of Bowen's 50th party. It was a mess. Ugh! Beth wanted to skip, she was sure that they were not gonna win. In between the school and home, I got gas, prayed for a friend, and had some "quality time with Beth" (NOT).

3:15 pm- Just as I am jumping in shower the phone rings--- Petunia needs picked up in 15 minutes. So much for a shower. Off I head to grab "precious". I arrive to find that the vet has yet to see her. Stuck for 20 minutes waiting....Hmmm.. how will I clean up and get out the door to be presentable with all the other PV moms? I get home and have 25 minutes to get us back to Landrum.

4:45 pm- I decide to hide my hair under a scarf/headband. Now you all know my secret. (A scarf means dirty hair). I throw on a cute pair of skinny jeans, ballet flats, and a fun shirt to go support my oldest.

5:30-6:00 pm- Socialized with other parents and was blown away with the project and all the kids competing.

6:00- We grab the last seats in the auditorium with some other families from church. Beth whispers "We can leave after my category". She was pretty confident they would only get an honorable mention. I have to say she almost looked shocked when they didn't get that. When they called the name of her and Emily, we all were speechless. Of course, I was proud of her! We just did not think they would place. There were 62 other REALLY good contestants. By this time, she is starving and I am too. I have no dinner in the fridge, so we leave.

6:55 pm- Home-sweet -home- I order a Brucci's special for $8. Beth whips up a salad and I sit down for 25 minutes while Bowen gets pizza. After grabbing a quick bite to eat, I am off to my last errand at 8:00pm at night... Publix for my final things for Thanksgiving.  NO WAY am I going after work tomorrow. While at the Publix a stranger says to me " Twice in one day- Did you catch your dog?" This was a bystander who watched my chaotic dog-catching in the parking lot... A stranger.  My reputation is now marked forever. LOL.....

So how was my day off today? A busy celebration as a mom of the details that matter to my kids.  Although I am hoping my sleep is multiplied...Was it restful, relaxing, me-focused?  No... But I would not trade being mama Slade for anything in the world.

Being a mom is full time job and I love it with all my being.
So how was your day?

Birthday Memories With Little Man Part 1

The pregnancy was so unique. I was so very sick, all the time, not gaining weight. The night before I delivered they joked and thought I looked 3-4 months pregnant.

Five minutes before Tommy was born, his fetal heart beat was not detected. I forget often that as I pushed him out, his very life was in the balance. I remember the craziness in the room. The cord was around his neck, they bagged him and he cried but then went limp. The second bagging was done twice and upon removing mask, he was breathing. His APGAR was 2/10 when born at 5 pounds 11 ounces and 18 3/4 length. Such a surprise after delivering Beth at almost 10 pounds and Ethan at 9 pounds.

The morning following brought a head ultrasounds for hydrocephalus. WHY was his head so large, body so tiny, and what was the deal with his highlighted hair. Dr's from the Children's hospital were now in and out reviewing this very unusual little boy. They required a special expanded neonatal profile- panel to rule out the many Genetic Disease we are familiar with.

The next few days and then year were a blur. So many doctor appointments, tests, visits to the local Children's hospital. Being a believer- I accepted that something was wrong and that God knew what needed to happen. At about a year the said it was a dwarfism, but could not identify which one. We should take a wait and see approach and keep living and raise him as little.

The first few years Birthday's were difficult, he was never age appropriate due to his tiny size and ability to due certain things at the "right" times.  Many a tearful, lonely Birthday nights privately. My mom raised us to make a BIG DEAL out of every Birthday. I have since improvised this to BIG FAMILY Celebrations. Birthday child picks the cake, the dinner, a friend etc. The Big parties are 5, 10, 13,16,18. This was the first Birthday I did not cry. His first real Birthday party was at 4 and he was really sick and did not participate. Last year we did a "real party" and for the first time he was in the Birthday Boy mode. This year he was all about the presents. He has caught up with the Birthday Day concept!

He proudly tells people he is growing and getting big. Our family grows with him. The uncertainty is gone. The big burden of neglect and lack of correct care is corrected. His siblings have learned to be selfless as they have had to put their needs aside to help him. The grief has lifted with help from medical professionals and healing from the Lord. Our faith is stronger and deeper. Our compassion for rare disease very real and personal now. Understanding for the complexity of medical navigating and how to advocate. We continue to trust him to heal as Tommy get's the daily treatments and we see it working where there looked like they was no hope.  Six year later we are stronger, healthier, and full of hope that he is growing in his own time.

Letting Go- One day at a time.

 School is in session here at the Slade house. We still go to the pool for a dip to cool off after homework is done. Our swim suits and beach towel's are on hooks ready ~ But yes the schedule has changed. Organized focus, early bedtimes, homework. All that comes with letting go of summer. HA!

 Beth hit 7th grade with her typical independence streak last week. Confident, secure, READY.  But then she got her schedule and went to class. Now- very frustrated with the new AP classes and changes to her routine. They went from 37 kids, an intimate number of kids, to over 90. Beth is no no-nonsense. Serious about school and committed to learning. Full of passion, zeal and soft spoken high level of emotion underneath as well. The first day of kids cracking jokes, farting in class about pushed her over the edge. Still working this one out for our oldest. Teaching, coaching, re-directing, guiding, this pre-teen. Letting Go for her feels different for our first borne.

 Ethan our middle child started 5th grade. (his last year before middle school) He is a riot. Talks non stop, trying to get us to pay attention to him or should I say remind us he is here and needs heard. He was mad for three hours that none of his buds were in his class (first time ever) When he heard me on the phone with Dad saying we may need to go ask him to be moved. He surprised me big time. "I want to try it for a week- I liked him and I think I want a man teacher, let's wait and see what the first week brings" He LOVES his teacher. When I saw his bio about half way thru the week. I saw he was exactly where he needs to be. Ethan is tender, considerate, full of boy energy and trouble sometimes. I saw that he wanted to be listened to what he needed. Ethan he is becoming a good judge of what he "wants" I am really glad I let go...

 Then there is Tommy. Our 27 pound almost six year old with Russell Silver Syndrome. (He is the size of a three year old) Tommy started Kindergarten this past Friday. He just started to grow, thanks to his GHT daily injections, we are seeing signs of progress. Understandably he is still my "baby" Letting Go with him is always touch and go a daily adventure. I know he is ready for this next step. Tommy is in a stage of wanting to be a big boy. He doesn't want to be a baby. He is gifted and full of life. He can play a song after hearing it one time on the drums. He brings joy into EVERY ROOM he walks in. His teacher sent me the following e-mail today about me helping him at the beginning of class today, which caused me to blog these thoughts.


Hello!

I am thinking that you can say your goodbyes outside and we will help him. He seems really into "doing what the other kids are doing." He did a great job today and seemed to really take cues from friends if he wasn't sure what to do. I wouldn't let him play basketball today with the others. He wasn't very happy with me, but I didn't want him to get bumped as they were running into each other alot. I hope you have a good evening.
Denise
Denise L. French, M. Ed.

Some things we really do need to let go and let the growth begin in our kids. Other things it's a process of Letting Go and seeing them grow and reach the potential locked in them waiting to be awakened in life. I am not an expert at this yet. I don't have all the answer's. It's a new journey of understanding the unique needs and personalities and what they need. Letting Go is not easy but important as we raise them to be confident and secure in who they are in Christ. I am learning one day at time.
Love Lissa+

Shared Life- We need each other

I went to a much needed lunch with a friend who's journey includes loving and advocating for her special needs children. Although feeling VERY refreshed from the beach last week and some personal adjusting I am doing, I found myself sensing another breath blowing over me, as we "shared life".  We share faith, family, and the journey with rare disease. There are many other commons. The way we get drained and exhausted in the fight to help, support and get the adequate care. I found myself thinking about the many out there like myself and her that might not understand, or forget the need to refill their own tank.

When we are dealing with the complexity of navigating care, an advocate, struggling with financial challenges that come with rare disease often, or a mom, balancing the demands of life. All is very relevant in the daily life. Sometimes we need to adjust focus to give attention to the needs or lack of attention to our own bodies. Physically, Emotionally, and spiritually. Often we need to also enlist others to come alongside and confirm things with us.

I knew for awhile that I was neglecting me in CERTAIN areas.  We went on a fast pace from May of last year to now to fix the needs that Tommy had to get and quickly. We did what would have happened in 2 years in about 8 months. CRAZY..... 39 appointments....There was a lot of grief I buried in the fast effort to fix the injustice of a broken system. I just kept saying" God will provide" But I buried alot of disappointment, anger, and feeling of loneliness. I actually had someone who did not get it make an insensitive comment that "Your situation was just not as bad as others" When I finally confessed this to a trained counselor.  They poured out compassion, understanding, care to broken hearted mom who needs some love and understanding and medical help to get back. I am coming back and will be stronger from the weak moments that have come my way.

Moms~ who are in the fight to care and advocate for the rights and needs of our very special kids. DON'T FORGET YOU. It's OK to ask for help. It's alright to say- I need someone to come alongside me, lift up my arms and get me to the other side. You do not have to be supermom. There is a you inside that needs nurtured and cared for. Find people: counselors, Dr's, people who have experience with this unique journey.  Sometimes it requires pulling away to re-charge. Other times it's adjusting. Personally I am adjusting. I am taking steps to re-fill, adjust, and fix the things that got neglected and tapped out.  I am choosing people to hold my hand, walk with me, understand, love, and respect this very unique journey. 

I am being reminded that there is REAL VALUE to the shared life, the open life and doing life together. Our society is so busy and we forget to invest or make time for the things we need. ONE ANOTHER.  There are many who have stood with me. Praying, believing, and hoping for what we needed. So weather your on the special needs journey, or anywhere else in life. Find someone to share life and come alongside and breath on you.  The person probably has been there and done it before you and can share the experience and help you too!
Your life will be richer as you do.
Love +Lissa

Celebration, Sorrow, Grief, and Joy- In EVERY Season....

Today we celebrated great successful news in our fight to get Tommy the treatment that can change the outcome of his genetic rare disease, Russell Silvers. There has been VERY LITTLE growth in his sweet body for the past few years. His bone age has him at a 2 1/2 year old, he turns 6 in September. I was considering the roller coaster we have been on in the fight for adequate care, after his miss-diagnoses here in Jacksonville. The last six years have brought moments of loneliness, isolation, exhaustion, and grief that is very different for a mom who has a special needs child. I have not found myself mad at God for the intense season we have walked through. I can say- that many a questions have been asked on how, why, and what do I do now.

Over the last year we have been on the fast track of fixing the mistakes to get him care. Many success's, a lot of forward motion to get us headed where we needed to get results in getting him to grow. Today was the answer to many a question's and fighting to help him. IT IS WORKING... our sweet boy has officially grown. Such great news for our family and the many who have prayed for us, stood alongside and tried to support us in the journey.

One of the few people who has reached out me and has the experience of having children with special needs sent me a text in response to the news: "We are in it all together. Way to many special needs kids out there" :-( " Her words of affirmation and celebration struck a cord deep in me. In the celebrating I found myself pondering... The many in struggle around me. In my own hour of celebration and joy others around me looking at grief and sorrow.  Our lives are so different, unique, and reflection to others around us. The life we are walking out is filled with all celebration, joy, grief, and sorrow.  My own understanding of this is has been greatly challenged in the last five years. I had not known or experienced the deep place of grief that silently crept in thru injustice, and having to FIGHT with all I had to get Tommy what he needed. Exhaustion, GRIEF, Disappointment in man, Weariness, had taken a toll that I could not see with my own eyes. Very few could understand this need in me over the past few years. I found that sometimes we need to just ask for help, understand we are not suppose to do it alone. We have God- We have each other to lift up our arms in the weariness.

Within a few short hours of our celebration, news came in of the loss of yet another precious part of our family at church. His courage's battle with cancer was over and he is now healed and whole with Jesus. This precious mother and her three sweet girls lost their husband and dad forever. While grateful,  grief will be very present as they experience the loss of one they love so deeply.
Celebration and joy in our home, grief and sorrow in there's. The body we love around us in such different places. We know that the word says he orchestrates and sets all things into motion. I think of the song by Hillsongs. "Desert Song" In every season, I will praise, I will declare God is my victory and he is here. All of my life in every season, I have a reason to sing. you are still God. I have to admit, singing this song over the last year has not been easy, but I have chosen to worship him in my own season of grief. I can't say it disappeared entirely. I can say this. Choosing to worship him and stay in his word did keep and comfort me in his very present presence. In this, he directed and helped me to understand and occupy till I saw the victory.  Which is FINALLY here.

So my challenge to you is to look around you and see who needs you to step in and share by celebrating, praying for the deep sorrow, and grief. Many around us need us to come alongside to stand, pray, encourage, love, help , believe. I needed it and I promise you, I am coming back thanks to the ones who correctly heard and obeyed his voice to help me in my hour. And now we celebrate and have joy again! Hugs on the journey, With all my heart, Lissa

Help Needed.......

Why don't we ask for help? I was raised by my mom, the oldest of 4 kids. My fiercely independent streak started at a young age. Mom was a single mom most of the years while I was growing up. This caused me to step and into a "doer" at a very young age. "A fixer"  I never really asked for help. I just stepped into to do and get it done. So... what caused me to forget how to ask for help? To say come along side me- I need someone. I suppose my moms busyness of raising us and doing the very best she could at the time. She was always busy-running our house so I just never asked. I just did what needed to be done or handled it by myself. When I left one week after graduation to find who I was I took this with me into adulthood and learned to handle it all myself.

When I came back to the Lord over 20 years ago. I learned about God who was my help and ever present for everything I needed for life. He is and was the only source for me.  Healing, restoration, redemption, restoring. He is and was all. I grabbed hold of his word, truth, stood strong and fast. In the hours of need ahead I asked for help from him and he gave it. Then a storm came like I had never walked thru. I knew he was my refuge and strength. So I climbed into the cleft and hung on for dear life. I hid myself in him, but lost an important part while I hid. Nurturing me in the storm. Allowing others to help. We need each other and help at times. There are times when we need to come alongside and lift up the arms, provide the physical need in front of us. Stand, believe, support.  Sometimes we need a doctor to help us to get our head around what is happening if we neglect us. I hid in him and neglected me in my storm,  while waiting on God to move, to help and show up as I needed him.

Psalm 46:1God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea;Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah.There is a river, the streams whereof shall make glad the city of God, the holy place of the tabernacles of the most High. 

 

Hebrews 14:14-16 -The message: The High Priest Who Cried Out in Pain:

Now that we know what we have—Jesus, this great High Priest with ready access to God—let's not let it slip through our fingers. We don't have a priest who is out of touch with our reality. He's been through weakness and testing, experienced it all—all but the sin. So let's walk right up to him and get what he is so ready to give. Take the mercy, accept the help. 

 

 He is of course is ever present with us in everything. Sometimes there us another voice in us,  we need to find in the storm. The one that says" Help Needed Here"  We are 3 parts and all three parts are a part of the big picture. Our physical bodies are a part too. When the shaking comes he is in the midst of us. Very often right in front of us are others who can stand in the natural to help us. If we will just say and ask. "Help Needed Here" There is mercy and help in the storm or time of need. Let's ask him and the others he puts around us "HELP NEEDED HERE" In the help needed hour, there is restoration, redemption, and "real support" if we ask.

Storms~

We were gathered for an afternoon on the beach at my friend’s home on the ocean. It was beautiful hot Florida day. Perfect in every way. The ocean was amazing with it's radiant shades of blue with small waves crashing the shore, above us the sky was blue and clear. The kids were in the pool and on the beach. Tommy was overcoming his fear of water and holding his breath, putting his head under. Big stuff for “Little Man” I sat in a chair and thought what a perfect day.  Around me, friends, extended family, relationships, encouragement, and thoughtfulness.  What a treat after a very busy couple of weeks for us.

When suddenly about three o’clock a storm came swopping in from no-where. I looked up and the most amazing shades of  gray, and black loomed around the house, cascading the ocean on each side also. Suddenly even the color of the ocean changed. It was a perfect picture of the storms of life.  None of us saw it coming and it sideswiped the rest of the afternoon for us. It gave me a picture and reached into my heart the passage from: Job 37:14

Job 37:14

New Living Translation (NLT)

  “Pay attention to this, Job.
      Stop and consider the wonderful miracles of GOD”

I am arrested in my tracks in the moment to STOP and consider this miracle in front of my eyes. I grab my camera to capture the breathtaking colors swopping in over us. My friend is trying to get me out of harms way, but I sense a reflection in the moment and pay attention to that still small voice inside, urging me to stop for the moment.

Then in the message it reads:

A Terrible Beauty Streams from God

 ^14-18 "Job, are you listening? Have you noticed all this?
   Stop in your tracks! Take in God's miracle-wonders!
Do you have any idea how God does it all,
   how he makes bright lightning from dark storms,
How he piles up the cumulus clouds—
   all these miracle-wonders of a perfect Mind?
Why, you don't even know how to keep cool
   on a sweltering hot day,
So how could you even dream
   of making a dent in that hot-tin-roof sky?

In this hot, steamy Florida day that was perfect in every way. I am arrested to look at the storm in the natural around me and how he the supernatural, orchestrating God gets our attention in a storm, if we will STOP and pray attention to the moment. It’s easy to get caught up in the EVERYDAY that floods our minds and hearts and not notice him in the middle of it.

Four days later I was at the same place and again the very same scenario unfolded at almost the same time. I could not help but ask and say: “ Lord, I am paying attention to the you in the storm around me. I am stopping in my tracks to be aware and awake to your hand. “

In the hard stuff around us, our God’s hand is very present.  (Even if we don’t see it)

This past week, a couple of storms gave me a “picture”  reminder of his very active and powerful ‘moving” right there in the middle of my day. I am listening and noticing the very present God who always has me covered and protected in the storm, and you to!

Special!

 Every time we arrive at Wolfsons for a special procedure. I am reminded of the battle many face ongoing in the rare disease and special needs community. A mom who tirelessly fights, instructs, challenges and protects on behalf of her child. (Dads too play apart here) We are here for an MRI of spine to see how bad the damage is on Tommy's spine/neck. An  xray back in the fall revealed subluxation on his C1 and C2. There was what appeared to be a lot of slipping. (as best they could see) The MRI is a better-clearer picture of what could be a problem. Today will determine how serious is the damage and if surgery is needed. Big head little body for so many years.(Go figure)

 

Mmmm. Gas makes me talk funny

  We have to be the first procedure, because RSS kids tend to be hypoglycemic and are at risk in fasting situations. This mom has a set of gloves labeled "special procedures".  Although very good at what they do at Wolfson's, they lack experience, and understanding, to give the support a mom like me, and he needs. They argue EVERYTIME over this very important need. I'm starting to win..
insistent that we give him fluids immediately. This early morning was no different, except that our nurse happened to be a PVPV mom who attends another local church. The head nurse was dogging me behind my back. BTW: I heard every word you said and yes I documented it. You really showed behave more professionally when mom is in the next "stall" and can hear you. HELLO......

I want DR Helfrich....he says.

 

 

   Little man is known now at special procedures. They think he is something else. He is special! I agree.  Unique and special with alot of special procedures due to his rare genetic disease he was born with. His miss-diagnosis locally has caused a back up off catch up procedures this past year. Teeth issues, pop-corn seeds in nose canal. Nothing is simple with him. It's always special. The dictionary says special is: better, greater, or otherwise different from what is usual.  Yep; That is Tommy and ever-other RSS kid in the country, well honestly all our special needs kids.

Other special needs friend. Josh

Pre- procedure physical yesterday

 The last few years has opened my eyes and heart to the very unique journey of moms with kids with disabilities and rare disease. Everyday challenges that are emotional, financial, and physically draining at times.  Unique and special is this walk and one that was ordained for us to do. If your tired today, tapped and need a reminder. You can fight this fight and win the race. You have one going before you and working on your behalf. Don't give up in the daily fight, tap into him and allow him to help you. Lean into the others who have gone before you. Thanks Ally, Amy, Heather, Stacy, and RSS moms who help me to know we can stay in the game and make a difference.  Where ever you are on the journey you and your child are special! Stay in the game and remember you are not alone. EVER..... May his peace keep you.

The fight continues and we will WIN.

5 years of data

 

Mommy and me riding out the storm

 It's been a whirlwind of a month in my families fight with rare disease. Dr Saal (Tommy's Genetics Dr and researcher from Cincinnati Children's) could only see me the week before school gets out. So I had to leave for three days to get the following done: His yearly evaluation by genetics, the sleep study,  feeding team appointment, along with xray's,  and blood work. ONE week before school got out.  I am a mom of 6th grader, 4th grader, and our sweet Tommy who has Russell Silver Syndrome MAT UPD7.   All three kids have needs and the timing was not so great. It's a super pressed time of the year for our family, but it had to get done, so off I went.  But in the going I got jazzed up again with CLARITY of understanding the complexity of handling his care and advocacy.  PASSION to not take no for an answer and not accept the delays.

I got to fly de plane

My BFF George always does it first

* The sleep study showed no hick-up.  We hear him stop breathing at night, gasping for breath.  Another mom and fighter for rare disease- with loads of experience has heard him and is sure he needs oxygen. We'll guess what during the sleep study,  he is fed oxygen thru his nose and he does not hick up. DUURRRR. Jacksonville just give my kid a machine. This is our next battle.... I am taking on this week. I may get my friend who's gloves are bigger then my experience to help me out. SOMETIMES we need each other.
* His height had less then 1 inch of growth in the last year.  Go figure...  His GHT has only been injected a month now.  No surprises here. His weight is one big concern also. Only 1 pound in a year. Hopefully-prayerfully, The combination of GHT and aggressive family support at making him eat will change this. Oh and the threat of a mic button if he will not eat.
* Our visit with the feeding team, left my head spinning. MAKE him eat. I had just gotten tired of the fight, and stopped pushing. The great team there jazzed me to come back and win.
* The blood test revealed we need to start monitoring his blood sugars. He fatigues easily and is cranky also. Waiting for the monitor to test blood sugars. This will come any day. He also is dropping ketones regularly. All new levels of managing and monitoring. Lastly, he has cardinal signs of ADHD. This explains the rough morning's for the last six months.
* This week we have a MRI of spine to see how serious the damage to his neck is from the years of trying to hold up that head with such a small body. I am really believing that there is no surgery necessary. Thankfully that rocking local anesthesia. Dr. with RSS experience will be with my boy again cautiously putting him out for the MRI.

Not liking these wires mommy

Let me show you how- says Tommy

Rare disease is ongoing. Initially we had the mis-diagnosis and the injustice of went with this. Had it been handled the right way I would not have had 39 appointments since January. Two of them being out of city. It's exhausting to see how SOME would give up in one way or another. Become laden with grief or loss. I probably have moments of those but they are VERY temporary. Usually opening up his word or getting someone who gets it to pray with me pulls me out quickly from staying somewhere I don't need to be.
YES, I get tired from this race some days, but then a day will surprise me and I will find "my fight" again and get back in the game. It's true that most the time Tommy's rare disease is treatable. My hope and prayer is that the mistakes that occurred will be "restored" back quickly to my son. That the loss of time for him, myself and my family will be redeemed. He is a delight, amazing, captivating in some ways. But what you don't see in his precious self is the time, effort, family dynamic that are evolving daily. Beth over heard me cancelling the trip to Chicago due to financial set- backs, to be with the other Magic families. Convention is a four day gathering of RSS families go to get information and support for the kids and meet others on the journey. She offered to give us her money she was earning house sitting to help us get there mid July. In tears she asked " When will it get easier for us Mommy" Yes- rare disease effects the whole family, emotionally, financially, and physically. We are grateful for having God at the center of our storm when it is windy. always reminded that yes, he calms the storm and settles the waves and helps us to win the daily battles.

People committed to helping us win.

NEW RSS friends took us to ZOO

Life is too short...

Life is too short....  To leave regrets, things left undone, to not live freely in the day that is right in front of us. Many days we find not enough hours in the day, often  we leave unfinished business for the next day. The details, and tasks of the day swallow us up and keep us in river flowing. This past week was VBS at our church. Every year it is a river with a strong current's of fast furious nature, waterfalls with free falls. This year we had 170 kids, 78 volunteers, 170 parents dropping off kids. ACTIVITY and MOTION in it's finest. Music almost non stop in your ears for 3+ hours for five days. It's super fast paced, busy, and I get to spend the week coordinating and playing firefighter. (Taking care of problems and solving the issues that come up) It has been my privilege and honor to have been director for my husband for nine years. This us one VERY busy week that leaves me thinking about many as I ponder life and families.

I have loved certain aspects of this role. Leading the volunteer team, that we have watched grow and develop over the years is one of the things I cherish. I have watched mom's who step up and into places that were not always their gifting, because it was the right thing to do. In the doing of that I have watched them grow in who they are in him. I love seeing people using their gifts and abilities. It's amazing to see the teamwork and flexibility with so many different personalities. There are also the many families who sacrifice many hours to serve and make it happen. This year I watched families really tight already make huge sacrifices financially, (gas monies) families w/4+ kids arrive at 7:30 to serve, deacons who just did whatever was needed, station leaders who stepped in to fill needs, (that were not easy or natural fits). The list could go on and on.  All to teach Pre-K - 5th grade that YES they can connect with God. This week is about teamwork(working together) and kids. What KIDS? The blind girl, the one's who's dad is in prison, who's parents are getting a divorce, the one who has instability at home, the one who has no friends, the one who lost a loved one, the shy one's.

Days go by and things take our attention and time that are often of great value or sometimes  meaningless. Last week I saw many embrace the daily life to make a difference in each other, kids, and families. This was of great value!  New friendships, new understandings, new eyes to see and ears to hear what he is saying and doing. Fresh perspectives and openness to see afresh the work happening around us. It was great work for an amazing cause for bringing others to and in him. Life is too short and the work around us is deep and wide. So embrace today, look around you at the many living loud and faithfully to proclaim a message.  Life is too short~ Embrace the day- be awake to the POSITIVE work around you.  All around us there is something we can be apart of. Embrace, live free, healed and ready to proclaim what he is doing in you. Cause it's good~

Memories and Firsts.... 2-18-2011

My only daughter and first-born came to us this day twelve years ago. This brings back a flood of precious memories and ‘firsts’ as a momma. The tenderness of the first hold of this tiny (well, chunky in her case) baby.  First delivery, first time nursing, first bath, first complications with health, first car ride, first diaper change, first night of nursing with no sleep, first visitors, etc.  All were firsts and new experiences in the journey of life.  It was new territory, new adventures, and new memories to log for the day and for the future.

I had my committed and amazing mom helping me vicariously.  She was devoted, loving, and raised us, for the most part, by herself.  So as I came into motherhood I pulled out those memories to help me through my firsts.  I didn’t have any blood family close by to help with the firsts.  They were all back in Iowa.  Mama Purvis stepped in to help me most the time. My dear friend Edi, had her first, one-month to the day after me, and a co-worker named Jennifer was having her second baby.  We were all pregnant together.  They helped me with the firsts that I found difficult to master.  We were building memories together, sharing the richest experience that God has to offer women.

In the past 12 years we’ve had lot of firsts and we’ve made lots of memories.  My sweet chunky dark-haired monkey has turned into a lean dark-haired beauty as we walk into the firsts of adolescence and the tween years.  I know we are getting ready to make some new memories and do some NEW FIRST’S.  Just like 12 years ago, I reach out and ask for help and guidance in the navigating of firsts.  I ask God and others to come alongside and help me on the journey.  I was having my devotion this A.M. and the Lord reminded me again of something very important. She is my first and God entrusted me to raise her.  He could have picked anyone, but he chose me to love, develop, discipline, direct, support her.  What a sweet reminder this day. 

This day I cherish the MANY first’s in the last 12 years of being Mommy and Mom.  I look at the memories and pull them out to remind myself of the richness of God’s love.  It’s not what you have that you leave behind. It’s what you did that leaves an imprint and impact on this earth.

Yellow Lights:

We run yellow lights most days. Right?  If we are honest we would all admit we are guilty of this. A yellow light means proceed with caution. Well here we are at Wolfson’s for Tommy’s teeth repairs. 8 cavities. (2 of them are holes in his teeth) Dr Richard Helffrich Anesthesiologist and I are going over history.  I am explaining the need for IV, his issues with:  subluxation, low muscle tone, and central apnea.  Dr Schneider (dentist) is listening patiently and “learning”

He is reading chart as I am explaining his rare disease. He speaks out loud while reading and listening to me. “He has Russell Silver- woo that changes everything.”

FINALLY someone with a LITTLE bit of experience. The next 35 minutes hold a call to pediatric Dr, pulling up x-rays and a WAIT and HOLD…  Caution ahead.

A very welcomed yellow light for this mom.

An “older and wiser” anesthesiologist who knew and understand the uniqueness of a RSS kid. He starts telling the entire room of nurses and the dentist- “Stop and lets slow down. This kid is not a typical.”  Thank you Jesus!

I usually prefer the green lights. Today I thank God for the yellow light of move forward carefully. I saw God’s sustaining hand protecting and watching over him.

For this I give thanks for a yellow light.  Any other day I would be frustrated with a yellow light when it comes to carrying for Tommy. Most local Dr’s do not have the background experience to support and care for him.

Today we added a new liaison-advocate for him here locally and I am grateful for a yellow light.

Growing pains

Beth our oldest is 11 going on 12.  She attends public middle school and is a high performance achiever, all A's and B's.  All A's prior to the huge change in culture from elementary to middle school.  She is an amazing helper, independent, and a doer in our house.  Always ready to help, she's a typical first born.  She has hit her pre-teen years and the whole house is feeling it.  I thought I was ready and had done all my homework but, much like a rare disease, we have run into growing pains with the hard real details of daily life.
She told me that I don't have time for her due to the fact that I'm always "dealing" with Tommy's issues.  She began accusing me with all the furry of a mid-west tornado (the ones that uproot houses and mame the surroundings).  I was not ready for this.  Jealousy and disappointment from the steady one who seemed to be flying through this all with great wings.  Wow- was I surprised. It created the perfect storm in a busy week of trying to nail some very important details down. Who would be Tommy's advocate to get the HELP we desperately need to get him treatment?  Suddenly I was the FAILED mom who did not have enough time for her.

I ran to the roar (with her and God).  I climbed up in her bed to talk it out and ended up with a black and blue left cheek and eye coming down out of her bunk bed.  I have NEVER seen my husband move so fast when he heard me hit the floor.  Those of you who know us can be humored by this.  He is the turtle and I am the race horse.  The ice packs came flying and he cared for me through the night to bring the swelling down.  He was a gem.

We know that when dealing with the complexity of doctor appointments, illness, lack of communication, support, and understanding, it is difficult for the family involved with rare disease. This is bound to surface in the family.  I just was not ready.  It's kind of like being ready when we are young and growing pains hit us.

I got some good counsel and mentoring on the growing pains from people I could trust.  They had experience with this tender age and our unique family situation.
One week later Beth is better and I am settled in the fact that we have a long ways to go and as a family. The growing pains are essential and necessary to ALL of us. Me included.

Hopefully I will get used to the growing pains and learn to enjoy them even when they hurt...
And prayerfully we will all be stronger when we get to the other side!

Joy, Pain, How, and Why…….

Most days I would say I am a vessel of joy, filled up and overflowing with all the goodness, grace, and joy we should know.  I’m full of fun, ‘up to no good’ as some would say.  Then most recently there have been days of pain and thoughts that run deep with questions of why and how.  I have spent many hours studying, memorizing, and contemplating scripture to know Him more.  Yet in my darkest hour, I cry out with desperation, frustration, with questions still for me and others.

Where are you in this God?  I need to see and know you are on the journey with me providing, sustaining, keeping, guiding, directing, and watching over me STILL.  Show me your hand, face, and word in this hour.  Bring me to remembrance of the promises I know so well in the grief and disappointment as I wait for you.

The joy abides even if not in view.  Deeply placed in my soul, it knows and keeps me, although not bubbling up it’s an ever present undercurrent. The pain that’s in my eyes and the eyes of friends shows the authenticity of our struggle.  Lord, this is Real.  You knew this same pain and yet carried it to the cross.  So why do we have such a hard time with this?

Finally, ‘how’ and ‘why’.  What does this mean for today and the rest of the days that You have for me to walk out.  Where are you in this all and will you show and remind me you’re close at hand?  I need your reassurance today EVEN when I question the closeness of your hand and presence.  Why me, God and not someone stronger, better equipped to handle this.  I know you’re here and near, even when I can’t see nor find you.  You are close - keeping, protecting, and directing me in the questions.

The pain runs deep with a need and assurance that you will answer in my pain.  Yet there are times you feel so far away.  I know I can count and depend on you even though it does not always take the pain away. It’s a place of hope and trust that I have come to know.  It does not eliminate the pain in a sweep, but most often in moments that are never consistent with what I want and need.  There is a place in the ‘how’ and ‘why’ where you answer and speak to the storm, the hurt and disappointment, to my hard questions. There are also the times where we have to wait in stillness, knowing you can and will move on our behalf.

Tonight I am grateful for your Life that is stirring me.  In my uncertainty, I don’t like not knowing the answer but I love the One who has the answers!  Even in the struggle, I know I can trust him no matter what.  He is my rock, my fortress, my hiding place and refuge in every situation.  He keeps me.