A Great Father

I had a wonderful Dad. He was everything our family needed and more. Although I miss having him here in person, his spirit guides me daily. Father's Day is not a day that makes me sad about his loss..it is actually a day that reminds me of beautiful memories.

Today, as we celebrated Jason and his father, both truly great Dads, I thought about how rare and special it is to have a great Dad in your life. I look at my husband and I don't think there is one thing more he could do to be a better Dad. He is a rare find.

So.. feeling warm and fuzzy about all that he does for our children and this family, got me thinking about the measure of a great father. I came across this neat list of 100 Ways to be a Great Father and what should be no-brainers are sadly often missed by too many busy or uninvolved parents. It seems a fitting list for moms too. I know I sometimes need a reminder and I wanted to share it here in hopes that we all stay fresh on the ways we can be better parents to our children. Yes..feels like a "The more you know" parenting PSA and I must tell you I chuckle that as I was reading # 2 my kids were screaming at each other and I could not imagine one word of praise at that moment. But alas I found # 32, a tool employed regularly around here!

1.Be present with your children.
2.Heap lavish amounts of praise on your kids.
3.Focus on the positive when speaking to your children.
4.Say I love you. A lot.
5.Don’t be afraid to show your emotions to your family.
6.Work on improving your relationship with your wife or partner.
7.Take time out from work for family time.
8.Laugh at yourself. Regularly.
9.Listen to your kids with all of your attention.
10.Learn new things by teaching your children about them.
11.Start a personal journal.
12.Hold your kids accountable for their actions and words, but don’t use punishment to teach.
13.Leave your watch and phone on your desk sometimes.
14.Make a meal for your family.
15.Do something wacky and unpredictable in front of your kids.
16.Spend some time one-on-one with your child.
17.Get moving. Have a fitness plan in place and get your kids to join in.
18.Take more walks, and leave the car at home.
19.Fall in love with your wife. Again.
20.Admit you’re wrong when you are.
21.Forgive your dad for any grudges you hold against him.
22.Teach a new dad what you’ve learned so far.
23.Take time for yourself, so you can bring that sense of fulfillment with you to the family.
24.Remember what you hated to hear from your parents as a kid and vow to be different.
25.Read out loud to your children.
26.Leave your work issues at your job. Don’t dump on your kids because you had a rough day.
27.Drop your change in a jar each day. When full, open a savings account for your child.
28.Once in a while, ask your kids what you can do better. Then do it better.
29.Hugs and kisses are golden. Be generous.
30.Let your kids make their own choices. Sometimes.
31.Get out in nature with the family.
32.Count to 10 before you react to your children’s actions.
33.Remember that kids mirror our actions, so watch what you say and do around them.
34.Parenting is a shared responsibility. Jump in and do something mom normally does.
35.Learn from your elders—ask them what they’ve learned as fathers.
36.When a child does something not so nice, separate their actions from them in your mind. A child is never bad, even though their actions may be.
37.The next time you feel like giving up on something, do it anyway and use it as a teaching moment.
38.Remember that everyone is somebody’s child.
39.Listen to yourself. Do you sound like your dad? Is that a good thing?
40.Give yourself a break. I haven’t met a father yet who doesn’t make mistakes.
41.Unplug the TV and pretend it’s broken once in a while. Or hide it.
42.Go with your child to school once in a while. Meet the teacher and ask how you can help.
43.Make your health and fitness a priority so you’ll be around for your kids for a long time.
44.Teach the value of service to others by volunteering in your neighborhood, church, or school.
45.Write love notes and leave them for your kids to find.
46.Read a book about fatherhood.
47.Write a book about fatherhood.
48.Make some snacks for the kids as a surprise.
49.Speak as one with your wife, so your kids don’t play you off on one another.
50.Do you say yes all the time? Use no when you mean it, even if they don’t like it.
51.Do you say no all the time? Say yes once in a while.
52.Snuggle with your kids.
53.Show your wife respect always. Make sure your kids do also.
54.Take the time to really explain things to your children. Don’t just say “because I said so.”
55.Ask for help if you need it. Don’t suffer from excess pride.
56.Accept who you are, but don’t settle. Strive to improve yourself every day.
57.Smile at your children and your partner.
58.Make amends when you’re wrong or grumpy or harsh with your kids.
59.Periodically assess your life and change course if needed. Don’t be unhappy just because you think you can’t change.
60.Take a class or learn a new skill with your kids.
61.Act as if you’re the best dad ever.
62.Imagine you’ve only got one week left to live. How would you treat your kids? What’s stopping you from doing that right now?
63.Let your kids see you cry.
64.Explore every park in your town.
65.Once in a while, take a day off and spend it with your family.
66.Find out about your family history and start sharing it with your kids.
67.Give high fives for each tiny accomplishment they make.
68.Get out of debt as quick as you can, and teach your kids about the value of being debt-free.
69.Take a big leap; teach your children about trust, faith, and the virtue of following your dreams.
70.Get down on their level and try to see things as they do. Chances are, you’ve forgotten what it’s like.
71.Learn some really corny kid jokes and use them often.
72.Hold a family meeting and get your kid’s input on important decisions.
73.Don’t just give your kids the answers to questions. Show them how to find the answers.
74.Remember, they’re never too old for piggyback rides.
75.Have patience with your children. Don’t expect them to be perfect.
76.Don’t insist on conformity. Let your kids follow their dreams, not yours.
77.Hold their hands, literally.
78.Remember to let your children save face. Embarrassing them in front of their friends is not cool.
79.Keep your relationship issues between you and your wife. Don’t let your kids take on all your crap.
80.When your children were babies, you gushed over them. Do the same thing for them now.
81.Don’t gossip around your kids.
82.Stand up for the weak, the oppressed, the underdog.
83.Grow a beard. (Actually, I just put that in to see if you were paying attention.)
84.Take your child to work with you and explain what you do for a living.
85.Make something by hand with them. Don’t worry about perfection, just enjoy the process.
86.Once in a while, give them a “get out of jail free” card.
87.Tell your children how much they mean to you.
88.Follow through on your promises to them.
89.Give your kids responsibilities.
90.Speak to your children as your equals. Give them the respect you ask for.
91.Plan surprises for them and keep them guessing.
92.When speaking to other adults, act as if your kids were listening.
93.Play games with your children. Let them win sometimes, but don’t make it obvious or easy.
94.Before you walk in the door from work, take some deep breaths and leave your work outside.
95.Give mom the day off once in a while, and get the kids to help you pamper her.
96.Be generous with your time, your energy, and your money. Give freely to those in need.
97.Cultivate your Fatherhood Superpowers.
98.Don’t let other adults get away with unacceptable behavior around your kids.
99.Remember the Golden Rule. It applies to your children as well.
100.Find your center and define what truly matters to you. Make that your inner retreat when life throws you a curve ball, and share that with your kids.


As for status around here..we are back home after a week with family due to loss of our air conditioning system. In the meantime, Sam has learned to completely get up onto all fours and is even trying to take that position to a sit position. He had one brady episode after a long day, but otherwise.. a good week.

He had gained more weight at his Dr appt and is now 19 lbs 9 oz..still small for his 15 month age but his Dr is so excited and thinks we may actually be on the growth curve chart by end of summer at this rate. So Very Happy and Thankful! The other big step is that Sam is now feeding himself tiny puffs with his own fingers. This is huge since his dexterity and fine motor have been a challenge for him, not to mention the feeding steps this represents. He still has some periods of struggle with it and these are quite dissolvable foods, but slow and steady wins the race.

God Bless- Amanda

Rest

Selfishly, I have stressed over an air conditioner breaking down this week and having to transport our family and all of Sammy's medical junk to stay with family while we work out the problem.

Then I went online tonight and was so saddened by the news that the families of two very special children are shifting to Hospice care. Eithene and Zach, and their families, need your prayers. Both effected by Mitochondrial Disease and multiple complex health challenges, are incredibly brave fighters and are so greatly loved by amazing families.

I can't imagine fully what they are going through. Lord, lay your hands over them all and give them peace in this difficult hour.


Come unto me, all ye that labour and are heavy laden, and I will give you rest.

Matthew 11:28

Nostalgia

This summer I wanted to be sure my kids did not sit around and miss some real hands-on adventure. They have enjoyed the usual suspects of swimming and popsicles on the patio, special nights over at grandmas and barbecues with out of town visiting family, but it can be easy to fall into the samo, samo rut and it is in those little adventures (some not even that involved) that we form our most prized memories.

One day last week, we took up a friend's offer to join them in driving up to a few u-pick farms in the north part of the county.. the not-so florida-ish, not beachy part of our area. We headed up early on a mission to pick blackberries, blueberries and peaches and although the sun was bright, they had a ball.

It was a fun outing and reminded me of summers up at my grandparent's house in North Alabama, picking from their extensive garden. Our days were so free back then, filled with shrieks of joy, imaginations run loose, red clay-stained bare feet and the adventures of a team of cousins in a treehouse or hiking in the woods. We were free to be pirates and princesses with our only decisions surrounding what time we would break for lunch and our only dissapointments at having to take a nap after lunch. We challenged eachother in our little red wagon, to ride faster and faster down the hill of my grandparent's driveway, over the bridge covering the dark gully, which we thought was really a moat filled with snakes and dragons. The sounds of crickets and cicadas, the wood screen door slamming behind you as you raced out to catch some lightening bugs in an old jam jar... such vivid memories! I would do just about anything to escape to that old porch swing creaking in the breeze while I rested my head in Mimi's apron, her soft voice.."I love you, a bushel and a peck, a bushel and a peck and a hug around the neck.."

So to my girls: I wish to help you make many summer memories and I will know I have done my job if you look back one day and feel tingley remembering the warm sun on your neck, the prickle of blackberry bushes at your ankles, the sweet peach juice slipping off your chins and can appreciate my quiet joy looking back to find you napping in your carseats.. lashes resting on sticky little cheeks.

As for an update on Sam, he is doing pretty well this week. One of his nurses lost her mother and so they are in our prayers. Sam had Jason and I to himself last night as the girls got to stay with thier grandparents. He seemed to take notice of the quiet.. maybe even missing them a bit. But he is quietly napping as I type right now (see pic below) and seems content to enjoy a rare, quiet morning with no sissys running all around.

He is trying to eat some new things but with each step forward there are days that seem to step back. We are taking it slow. He is doing some new things with his movement. He is trying to get his knees under him, but pulling up his carriage is no easy task. He is rolling all around, his way to crawl I guess. This morning, he tried to do itsy bitsy spider with me and almost ended up clapping his hands.. it won't be long. He needs a cooling vest to get out and enjoy more activities as the Florida heat is just a little much for him. They are not cheap and so I am researching this. He has been in the pool twice now and seems to get alot from the weightless feeling. He wants to push out from me and glide across the water to his sisters. The pool has been a blessing for widening his experiences. It is only the start of the summer and already seems promising..

Lord, thank you for the adventures of summer.

Lost Trust

A story of lost trust...

Mom and Dad bring complex baby home from hospitals.

Mom and Dad get unwanted, hands-on emergency medical training in handling acute events... over and over.

Events happen spontaneously. They live in fear.

Mom and Dad live on-guard at all times. Mom sleeps very little.

Nursing care arrives like a dream come true after a year of nightmares.

After swinging door of nurses, finally they have a dependable, routine established with knowledgable, caring professionals.

Mom and Dad finally sleep in peace. AHHH.

Last week: Mom has pangs of concern over a series of odd circumstances but believes the best of caring night nurse.

Mom hears baby crying in the night and not clearing airway well of secretions.

Mom enters room. No Nurse.

Mom searches house. No Nurse.

Mom looks outside. No Nurse or Nurse car.

Nurse eventually comes in sheepishly. Mom breaks down.

Where was said Nurse? Nurse says he took a walk to stay awake and has done this for quite some time. Nurse says it will never happen again.

Mom is astounded. All trust is lost.

Baby's life was not important to Nurse.

Agency says no other nurses are available and that after they reamed said Nurse, no such events should happen again.

Mom finds herself researching Nurse and finds odd statements online by Nurse that they feel empowered with past Hospice cases by the ability to call time of death.

Mom feels sick. Mom can't sleep.

Mom and Dad live on-guard yet again. New worries fill their heads.

Mom and Dad pray about what is best.



That is all I can say about my state of mind this week..

Land of the Free, Home of the Brave

Most people think of Memorial Day for barbeques and flags flying. But what is easy to forget is what we are meant to remember on this most honored national holiday.. those who fought and died for our country and the freedoms that we hold dear.

Today we woke bright and early and drove over to Barrancas National Cemetary at Pensacola Naval Air Station, where my father and many other service men and women's remains are laid to rest; the dates of their lives and the wars during their active duty service marked on white marble grave stones... a somber, peaceful place to feel the magnitude of their sacrifices.

The symbolism is not lost on me for why the graves all match and are lined up in almost regimental order across those fields of green. They are our soldiers. Each stone, a life that was lived in the name of our freedom. Generals and enlisted airman alike.. no longer set apart by rank in this sacred place, they were all lost with the same level of duty. Some lost in battle and others after very old age..makes no difference in this place.

This was a first visit for the girls. I only visit a time or two a year and before now I never thought they would understand. We explained to them that my dad's body lies there, but his soul is with God now. I worried they would break the peaceful atmosphere with questions and chatter..but no. They seemed to understand the significance and respect owed to this place. They left roses and we prayed. We prayed for men and women out there fighting for us overseas. We prayed that my father know in Heaven how thankful we were for him in our lives. There was a rose for each of his grandkids who he never had the chance to know, one rose for his daughters and one rose for his wife, my mother, who accompanied us today.

After we visited his graveside, we walked amidst the older sections of the cemetary. There are buried civil war veterans and their families as well as famous indian warriors. It was beautiful walking under trees as old as the graves. Those trees hold the secrets and stories about all those beneath their roots.

Thank you, Lord for the Red, White and Blue.

Grits

As we go into Memorial Day weekend and as I am in a more restful state, I am finally blogging about the last week or two. You will have to bare with me if I am all over the place as I have a pina colada at my side.. celebrating the end of a good day. I rarely have a drink (like ever anymore) as we don't get out much so it will probably make me silly. Jason says I have no filter to speak of, showing all my emotions on my face.. a pina colada makes this all the more true.

This week Sam had some bouts with off-balance, illness-like behavior. It is hard to call it an illness since most of his bad days are more about bad gut function and pain, not necessarily brought on by fever or a particular virus. I am so tired of the counting of diapers, analyzing stoole consistency and questioning each next step.. 'more miralax or less?..more colace or less?... stop feeds or switch to pedialyte?.. more motrin? more cuddling? hit the hopsital? and then oh but now he is fine so no..' this sums up the constant weighing of how to keep him comfortable.

The last time I blogged he was having increased episodes of bradycardia amidst GI issues and that continued on through that next week on and off. He had both types of hypoxic looking/ desating bradys..the kind where he just looks like he might drift into never, never land and the ones where he is rigored and locked in a no breathing scarey pose. We have drawn the opinion that this is some kind of hypoxic seizure that is only occurring because his oxygen saturation in the brain has dipped too low for too long. It just happens so fast..from beautiful cheery sweet face to him locked into some kind of nightmare pose and dropping out fast.

One particular instance followed an early steps annual evaluation. There were maybe 6 women in my living room from the various therapies etc.. and then also the rehab equipment guy was here fitting Sam into his new activity chair. The chair is perfect and allows Sam a little more stabilization for getting upright and doing more fine motor rehab and working towards eating orally. Pricey is not even the word.. $3000 fancy high chair.. but it works! They also provided a bath chair which will make bathing a little more organized and safe for him. SO...He was doing fine and having a good morning. We had concluded with goal setting for the year and just as everyone headed out, the nurse took Sam off to his crib for some rest.

It was during this shift that Sam decided to introduce her into what we have grown to call our stiff, rigored bradys. He had another one for me and the occupational therapist this week while working in his chair on wednesday morning. He was not really into the session and all of a sudden he was blue and not breathing. The interesting thing is this time his moniters were not alerting. The levels on the moniter were dropped recently and I am hoping we did not prematurely drop these too low or else I will never feel I can even look away for 5 seconds. The heart rate level is set to alarm below 60 but I have watched his get into the 50s before it is alarming. His normal baby heartrate is 130 and I worry that actually being down at 70 for a prolonged period is still low enough for a symptomatic brady. IN the stress of the moment, we rarely analyze what the numbers are at during the event. We are due a cardiology appt so that will be something to ask. Speaking of appointments we had a neurology appt as well this week. I have little to say on it... always leave emotional and I was not going to let it all get to me right now. We had to get more bloodwork as his medds are getting increased and that was a big effort. His veins are impossible to access.

The girls have been out of school for almost two weeks and they are busy transitioning into a summer routine. The pool and playdates are big favorites right now. They did get to do some boating already, once with family and once with friends. The family trip did not include Sam and I as it was a Saturday and we did not have nursing. We thought it might be a bit too much for him in the heat so Jason and the girls got to spend the day with grandparents, a cousin and some family down from Minnesota. Maybe with a cooling vest (as we were recommended to buy by his Mito Dr) he might do better on this type of outing. Those are not cheap either so it may have to wait for now.

We are so blessed to live in a place with such fun outdoor activities. One of our friends took us and a few friends out on her dad's boat Thursday. The kids played on the beach at crab island for hours, having a picnic and watching the dolphins race the boat. Another friend along for the day had never been out boating and has lived here since 2006. WOW.. I felt guilty not to have introduced her to probably the best part of living on the emerald coast. It was such a great day! None of this would have been possible without the nursing coverage, so for that I am most thankful. I really wanted the girls to have some fun experiences this summer and right now we hope to at least once a week plan a little outing with friends.

This week I attended a change of command ceremony for a new friend who lives in our neighborhood. He was taking over the command of a division of Osprys at Hurlburt AFB. Sitting there, watching the order and honor of the ceremony took me back to my dad's years in the Air Force. With Memorial Day around the corner, it was a nice reminder of all the men and women who serve our country and have given their lives in combat.

The biggest news of the last week has been all the movement Sam is making during floortime and in his crib.. he is all over the place! Mainly rolling and scooting with his arms, but motivated to no end! He may move right on to crawling before he even learns to get into a sit. We are so excited to see this even amidst the bad days of GI pain and Bradys. It was nnice to see that there were still pockets of time where he was smiling and moving around playfully. He wants to get back up on the knees the way he did that one time in therapy... it won't be long from now.

The other big news are the strides Sam is making with his feedings. Up until last week, we had only gotten a few bites here and there and it was a struggle..then it seemed to be getting a little easier with him self feeding foods that dissolve in the mouth like mum mums. Then during dinner tonight.. he discovered grits. In perfect southern tradition, they won this boy's heart! He loves them and was not choking or turning blue. In fact, he was crying out for more! He even allowed some sips of water to help clear his throat. Water sips have been hit or miss in the past as well. I think the new chair is helping in some ways and the increased strength he has been building in his neck with physical therapy.

As for today, we broke normal saturday tradition and just relaxed by the pool. I invited neighbor friends and their kids over to swim all morning, and then we all crashed on the couch for an afternoon siesta. Jason cooked up dinner.. quite a treat! Shrimp-n-cheese grits with ham and veggies. YUM - Good southern summer fare! It was the ultimate gift of thanks for Jason to see Sam take off at eating it at the dinner table.

Included in my prayers this weekend are my sister and her family, relocating to a new home in Belgium. It will be a busy time for them but quite an adventure as well.

Well.. cheers to the week ahead and hopefully one filled with progress for all of us!

Expressive

Driving down the road on the way home tonight, a sweet little voice in my back seat whispered, "I don't want to grow big yet, Mom." I thought for just a second about saying.. " you and me both!" but instead I gave my 'growing older is fun and exciting' speech. You know the one.. think back to an episode of an oldie goldie sitcom like Growing Pains or Full House. I completely get how she wants to just stay where she is..don;t rock the boat. Bless her for those feelings of butterflys! I wish those were the extent of all our worries forever on..

Here are pics from Bella and Sofie's graduation/ end of year programs. Isabella's class award was for being "Most Expressive." This is NO suprise - whereever did that come from?!

Such sweet girls!

Samuel has been pretty sweet himself..even when not feeling so grand. He had a touch-and-go weekend with some transitionary GI pain. We tried to keep things quiet and not disturb the balance. Sunday night he seemed much better and I shot a few cute pics with his dad goofing around. He is making some progress in recent weeks. He even got some peas down the hatch this week in therapy!

Then yesterday, we had just walked in the door and I had a few things to put in the frig so I left Sam in the car seat in the dining room for a minute or so. As I walked back his way, I found him stone grey, eyes bulging and fully rigored in a hypoxic pose. It was back to that adrenaline rush that always makes me sick. I am amazed I don't have a heart attack myself. I start stimulating and rubbing him, pulling him out of the seat and trying to get him to just breathe. It does not get easier..it still feels like a rather animal instinct..all I am thinking at that moment is.. please no.. please no.. please no.

Overnight, he was ok but today while I was at Sofie's program, Sam had another of these horrible bradycardia and dsat episodes. His oxygen saturation was down to 30 and then even when she got the O2 on him he hovered in the 70s trying to get him back up to 100. She called me on my cell and said we might need to mobilize for the hospital and I shot out of there in a flash..something in her voice told me she was scared for him. I was so worried about him going into cardiac arrest. Calling 911 is such a hard thing as it is hard to know when to take this step with Sammy if it is going to happen often and he will usually recover. Clearly if your child is doing this and turning blue or grey you would call if you did not know his history.

The adrenaline of these episodes is going to put me in the grave. It just isnt healthy. He went on to have two more today, neither as bad as those first two but accompanying these increases in events, was a new unusual symptom.. skip ahead if you hate my BM talk.. but basically many, many loose pale stooles and an incredibly foul odor. On top of that the GI pain seemed to kick back in. Never fails.. we can't go a week or two without some new issue.

So, we have an appt for him tomorrow and hopefully the rest of his evening is less eventful. On a happy note, Jason came home early to relieve me and I was able to go up to my church to help out at the dinner and attend choir practice. I worried about leaving Jason with Sam after such a bad day, but I needed to get some room to breathe after being such a bundle of nerves all day. It worked.. I felt better as I soaked up some comfort as we sang, "Do Lord.. oh Do Lord.. Oh Do remember me.." It is all going to be ok.

Praying tonight for a friend who is awaiting biopsy results and another friend who is by her brother's side as he was in a horrible car accident and has sustained very serious injuries. God give them all calm and strength to get through each day.