Farther Along...

Today has been a mix of emotions for me. I am always very thankful for July 5th because it's the day that GOD made me a big sister. I was blessed 30 years ago to stare through the glass at a round faced little baby, knowing that she was coming home with us to play with me and I was super excited. Since then, it's been a wonderful roller coaster of lessons and life and love and I'm very happy to have spent the weekend celebrating Brittney and everything she means to our family.

But I would be remiss if I didn't spend some time putting pen to paper regarding the sadness that has caught me a little off guard on this day for the past 3 years. Many of you know that David and I worked really hard to have Blake and used a form of fertility medicine to conceive him. About 6 months before we finally got pregnant with him, however, we lost a baby. I was 8 weeks into the journey and the baby just stopped growing. There was no heart beat to be found, and in fact they were unable to find a sac of any kind after a certain point. It was the hardest most painful loss that I have ever experienced as an adult.

Today would have been Shelby's 3rd birthday. She would have shared her special day with her Aunt Bb. And while I know that God's timing is NEVER wrong, NEVER late, NEVER early, it's hard to not be frustrated, sad, upset, angry, disappointed that HIS plan was simply not what I had in mind. Things did not go the way I wanted them to.

And yet here I am with 2 beautiful, wonderful, thoughtful, caring, special children that are learning and growing and making me proud every day. I have many things to be thankful for. Many reasons to feel blessed. To know that my CREATOR has a plan for me. And while i try to rest in those promises, today, July 5th, is always peppered with a few tears, some deep breathing, and a box of tissues. I allow myself those moments because I know that some day I'll understand why.

This song has always been one of my favorites. It comforts me in times when I want to raise my hands in frustration and anger. Tonight it has provided me a sense of peace when our loss as a family seemed closer than it does at other times of the year.

"Cheer up, my brother. Live in the sunshine. We'll understand it all by and by."

wash...rinse...repeat...

MEDS, 7:30pm
Enalipril: 2 mls in a syringe: give, wash the syringe, meds in the fridge
Prevacid: Split the pill, put it under his tongue, wrap the other half up
Erythromycin: 1ml in a syringe, give, wash the syringe, meds in the fridge
Periactin: 2 mls in a syringe, give, wash the syringe, meds in the basket
Cephalaxin: 3 mls in a syringe, give, wash the syringe, meds in the fridge

POST MED, 7:40pm
Diaper change.
Temperature check.
Blood pressure and heart rate check by hospital cuff/monitor
Teeth brushed,
Pajamas on.
blanket and paci found.

Boy. in. the. bed.

PUMP SET UP, 7:45pm
Formula bag hung
Ferrel bag hung
Formula Bag attached to Ferrel bag
Extension set cleaned out and attached to ferrel bag
Formula poured into the bag
Pump primed

Attach extension set to Blake

Turn on pump

Press start!

BEDTIME, 8:00pm
Sing a song
Kiss boys
Nightlight on
Overhead light off
Door shut

Collapse.

Self Preservation = important

Not really in a place to write a novel tonight but I thought it might be necessary to put out there how important self preservation is. Not just for special needs moms, but all moms and dads, working parents, grandparents, retirees, etc.There is simply something to be said for taking a break from life. As the mom of two special needs children, I am finding that this is more and more needed if I am to continue in my current position as "The Meeter of everyone's needs".

Yesterday was Easter. A day of celebration, family, good food, friends, fellowship, worship and friends. Confession: By the time 9:30am rolled around, I had snapped at all three of my boys at least once. I was high strung, rushing around, completely anxiety ridden, a hot mess. Like a Xanax kind of hot mess. That anxiety continued for the rest of the day. All the nervousness I was feeling came from my own inability to push away the stress from the previous week. If I had just taken a few minutes last week to be still, settle down, find a quiet place to be be calm, I might have been more prepared for the craziness of Easter and my family might have gotten a better me.

And isn't it interesting that GOD totally planned that kind of self preserving into our week before we were even mentioned or thought of?

Leviticus 23:3 : "Work six days. The seventh day is a Sabbath. A day of TOTAL and COMPLETE rest. A sacred assembly. Don't do any work. Where you live, it is a Sabbath to GOD." 

And here I am, blowing through the day, forgetting that GOD intended me to rest. To put everything aside, the running, the going, the calling, the organizing, the doing.. and just rest. And not a little, COMPLETE REST. I need to be better about this. Maybe not even wait for Sunday. Maybe a little bit of Sabbath once or twice a week before Sunday even comes so that I can be the best me for my family when it is time to be still at the beginning of a new week.

Tonight, after I had served dinner and everyone had eaten, I let my husband know that I would be getting into a hot bubble bath with candles, warm towels, clean pjs and Crossing Jordan re-runs and then after that I would be headed to bed. He was quick to hug me and reassure me that he would have no problem tucking the boys in and to just rest.

It was glorious. It was a small Sabbath. It was important and awesome. Learn from my mistakes. Take some time for you. Not just because it's smart, but because GOD said so too :)

But then there were angels

I won't pretend that life is always hunky dory in my house. That things are always sunny and that we don't have our share of problems. Blake's health issues and Wesley's need for therapy aside, some weeks are down right crappy. And I think it's important to be real. Sometimes I think people assume that my faith in a GOD that loves me means that I'm not allowed to be frustrated or angry or depressed because of the curve balls my little family has been thrown. That's just not true.

In the past two weeks there have been a lot of happy tears, smiles, encouraging words, moments of laughter, prayers that have been answered, snuggles and joy. But there have also been really hard moments. Like the fact that our refrigerator is broken. It's been broken for 2 weeks now and we don't know why. It's 9 years old, it came with our house and we don't have the money to buy a new one. Like the fact that our hot water heater has been leaking for 3 weeks now and it's less than 2 years old and we don't know how to fix it or what to do about the leak so there's a hospital throw up bucket protecting our mudroom from eminent flood. Like the fact that even though both our children have Medicaid as their primary insurance right now, we still have medical bills that pile up and we are required to pay. And while David's new job is a step up in salary, we didn't account for all the hospitalizations and lab work and upcoming therapy and broken appliances.

But then there were angels. I love it when GOD changes our story just slightly with presence of angels. 

Angel #1: I got a message from a dear friend last week to let me know that she felt led to gift us a portion of her tax return. No questions asked, no need for a big fuss, just wanted our address. The check came in the mail while we were struggling last week in the hospital. Money was tight because I was having to eat hospital food. That loving gift will help us make up for the money spent that week by paying some of Blake's bills.

Angel #2: Today I called the plumber that originally put in our hot water heater. The broken part was under warranty but the labor was not. I was waiting with a check when he arrived. He finished the job, patted Blake on the head, thanked me for calling him and said "God Bless". He wouldn't take any money for his time.

Angel #3: My parents were members of a church in Richmond for 30 years. The church I grew up in. Members of that church are still bringing our little family meals when things get tough even though my parents no longer attend there. One of the dear families that attend that church even brought her three kids and a backpack full of toys and electronics to Blake and I while we were at the hospital so we wouldn't get so bored.

Angel #4: A sweet girl from high school, a wonderful friend that I used to play softball with, happened to be working downtown when we were inpatient last week. She had just a few minutes away from her office and spent those few minutes delivering some treats for Blake and I. What she didn't know is that the lollipops she dropped off were Blake's first taste of something in 5 days and he ate it til it disappeared with the biggest smile on his face. I cried.

Angel #5:  My Aunt drove all the way from Fredericksburg last Wednesday night, stayed at my parents house and came to our house Thursday morning so David could finally go back to work. David had no sick days saved and was unaware of how he would be reprimanded for his time away from the office. She sacrificed her health to be here when we needed her.


But then there were angels. Because I was promised: "for the LORD your GOD goes with you; HE will never leave you or forsake you."

And though the crappy days are still hard and the frustrations are still present and the depression is still nagging, my story is changed just enough by the presence of these angels and many others and the road just gets a little more bearable.

It's the not knowing

People ask us on almost a daily basis: "How do you do it? How do you keep it all together?" They say things like "You are such an inspiration" or "Your family is so amazing". And don't get me wrong, these are valid questions and these sentiments are so thoughtful and genuine and we appreciate all the encouragement, but I have to be honest.

It's hard. It's hard having a chronically ill, medically compromised child. It's difficult to remember medicines, give all the feeds necessary, keep all the appointments organized, get all calories counted, take all the vitals, order the right medical equipment, call the insurance companies, schedule therapy and fight for every oz he gains. But that pales in comparison to the "not knowing". It's the "not knowing" that's the hardest.

We don't know why Blake's blood pressure is high and hard to control. We know that it's related to his kidneys and his medicine has a hard time being metabolized by his GI system so he doesn't get the most effective dose. But we don't know what caused the problem to begin with.

We don't know why Blake's GI system doesn't work right. We have no idea why he has Gastroperisis and why it doesn't empty correctly. There's no rhyme or reason to his ability to keep food in his stomach or get rid of it.

We don't know why his legs are turned in. His femurs and his tibias are both facing his middle. His hips are just fine. The orthotics hes been given aren't really helping but we are trying. And yet, it's still frustrating to have no answers.

We don't know why his immune system is so compromised. He gets sick a lot. This week will have been our 4th admission in 3 months and our longest one yet, at 5 days 6 nights. We have no answers for that. I don't know why he gets so sick all the time. I just don't know.

We don't know what exact GI bug plagued him this week while we was in the hospital. There's been no positive test for anything specific. We haven't found a link to anything this week that would help us get answers for all our other questions.

We are anxiously awaiting the return of the genetics/mitochondrial testing. It might give us answers, it might not. If it doesn't then we are stuck with the remaining anxiety and frustration and weariness that comes in the "not knowing". But then, are we really?

"But they that wait on the LORD shall renew their strength; they will mount up with wings like eagles; they shall run and not be weary, they will walk and not faint." Isaiah 40:31

She said "I'm sorry".

"I'm sorry" is a heavy phrase. It can be said for many different reasons and sometimes it means absolutely nothing because it is said with no feeling. No emotion. But then there are times when those that utter these important words genuinely mean it. Today was one of those times. 

Many of you know that Blake has been diagnosed with hypertension. This was found when he had his MRI in early December. Unfortunately, this had been going on for the better part of 6 months when it was discovered. Unfortunately, because this had been going on for so long, his heart was compromised and the walls of his heart are thicker than they should be. All because the doctors and nurses we saw on a regular basis neglected to check twice and then look back into his chart to find out if his normal BP had been high. Unfortunately, until today, I have been angry. I have been carrying around a frustration and anger with the medical profession because their inability to follow through and take an extra 5 minutes to check my child's chart resulted in a thickening of the walls of his heart. 

This all changed in an instance today when she said "I'm sorry". 

We saw our Endocrinologist today. We love her. Her name is Dr. Shankar and she is a beautiful, wonderful, caring person who really listens to her patients. She takes time with each one. She's always running a few minutes late because she's always sitting with her families long enough to make sure all the questions have been answered. So no one complains because she is just that great. Today was no different. She was running behind but we were happy to wait. And then she walked in, said hello to Blake, took an interest in what he was playing with, greeted me, sat down in her chair, pulled herself closer to me, put her hand on my knees and said: 

"I'm so sorry. I'm sorry we didn't catch his hypertension sooner. I'm sorry I didn't take the time to look into his chart. I'm sorry it affected his heart and I'm sorry it took us this long to help him in the way he deserves."

She said "I'm sorry" and 3 months of anger and frustration melted away. I cried. Then I hugged her and thanked her for being humble enough to say she was sorry. I told her how much it meant to hear those words and that we were going to be okay. 

And we will okay. One day, one conversation, one doctors appointment, one prayer, one "I'm sorry" at a time.  

Feels like home to me

Today my whole family and my Mom and Dad and I went to Chesapeake, VA to worship with the Bayside Church of Christ congregation. For those of you that don't know, I grew up in the CofC and haven't been back in quite a while. Not because anything went wrong, but because I married a man who grew up Methodist and we decided to join a church that we both felt comfortable in so we are now happy members at Commonwealth Chapel, which is loosely associated with the Assemblies of God.

But after being gone for quite a while from the denomination I called home, there is something so comforting about going back to a familiar place, smelling a familiar smell, seeing a familiar face. There's something about the that specific comforting feeling that our brains associate with "home". I believe that's a blessing from God.

Growing up in church we used to sing a song called "This World is not my Home" and it was all about how short our time here is on this earth. It was a gentle reminder that the things that we place so much importance in are but a fading shadow. That here isn't our home. That we're just passing through. And while that is true, I think God also gives us these small glimpses or feelings of "home" every once and a while to bless us. Today was one of those days for me.

We walked in and took our seats, one of the gentlemen from the congregation said a word of welcome and then there was singing. Beautiful, a capella, 4 part, lovely, sounds like home to me, singing. We sang 3 of my favs and I all but belted them out because it felt so good to hear "home" from my spot in the last row.

We took communion. Together as a family. My boys dropped coins in the collection plate. They don't do that at our church because they are already in their classes when the offering is taken. The sound of little hands with quarters was so satisfying.

We were blessed by a beautiful sermon about truly hearing GOD, sang a few more songs, stood around to hug familiar faces and then headed off to get lunch with my Granny.

My Granny, Betty Lou Hoskins, is 77 years old and my only remaining grandparent. We don't see her often but when we do the conversation is peppered with Southern Alabama sayings "I do declare", "I reckon" and "Oh my stars above" and more hand gestures than are truly necessary. I love her dearly. Her hugs feel like home.

Maybe the most sobering reminder of home came when we left the restaurant and went to see my Aunt Jean, who lives in Norfolk. She is also 77 and just lost my uncle, the love of her life, in April. He was 7 years younger than she was and died suddenly of a heart attack. No warning, he just went home. Today was the first time I have been to the house since he left. The house is quieter now. More empty even with her in it. And I cried as we drove away, for her and for us because I miss him. And yet, as I type this, I am smiling because my Uncle Darrell is home now. He doesn't just get small wiffs of the "home" smell, or hear a few bars of a congregational hymn and feel "at home". He is done with his pilgrimage and sitting down with his Jesus safe and sound at home with the Lord. And that is fantastic.

Today I was blessed by glimpses of home. And it doesn't get any better than that.