Mother's Day

My Mother's day was nice...a few bumps but nice. Carter, Luke and Brayden had lots of goodies that they had made (Brayden painted a flower pot at school) and flowers for me.

It started with an alarm on one of our safes going off. It was going off because the batteries were low. It was going off at about 5:15 a.m. It woke up everyone in the house.

After the alarm was taken care of (which took way too long to fix), Jeremy made some breakfast. At breakfast was the discussion that it was Mother's day. The boys wished me a Happy Mother's Day. Then Carter asked when it would be Father's Day. Luke asked when it would be Kid's Day. We told him that there was no kid's day. He, of course, asked why. Jeremy responded with, "Luke, everyday is kid's day."

Brayden apparently thought it should be his day.

He screamed all the way to church (Jeremy was about to turn around and go home). He cried on and off during church; I did my best to console him. Then we went to lunch, at a delicious restaurant. Brayden cried on and off.

As Jeremy loaded him into the car, he leaned to me and said, "Why couldn't God at least have him not cry at lunch? At least not today." I assured Jeremy that lunch was still delicious and such a treat from appetizer to dessert.

He cried on and off the remainder of the day. Sometimes he has days like this without any rhyme or reason. He finally settled down shortly before bedtime when Carter and Luke climbed into bed with him and read books.

Apparently, Brayden did not get the memo that it was Mother's Day. Brayden wanted all the attention.

We have AFOs

Brayden picked up his first pair of AFOs today. I did not remember ordering something so jazzy...

He tried them on and was not happy about them at all. Then stomped his feet on his wheelchair. The noise or the hard feeling made him even more mad. After several minutes he settled in and did not seem to mind.

After the office, we headed to Stride Rite. We tried on several pairs of shoes; something that was wide enough for his extra wide feet and with the AFOs on (I don't think they make a quadruple wide). We found one pair and still it looks like the shoe is going to explode.

We might be giving those "special" ortho shoes a try (ugh) because he feet and AFOs barely fit.

The first day he keeps them on for an hour and add an hour after that each day. Eventually, it looks like he could be wearing them most of the day.

Toes in the paint

Brayden did a little artwork...with his feet.






















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.Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts. And we are never, ever the same.

When the odds are against you

The divorce rate for couples with special needs children is over 80%.

Over 80%. That is not very optimistic odds.

I understand why. This is hard. This is exhausting. This draining. This requires more effort than we think we have to give. We give all of our effort to our children. At the end of day, there is not much left.

The children need all of the care. All of the focus is on them. The children have all kinds of help through therapy, doctors, educators, etc.

What about the parents?

Many times, Jeremy and I have said to people that Brayden (Carter and Luke too) is well taken care of, we are the ones who need prayer and help.

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If you are a family with a special needs child...find support for your relationship with your spouse.

If you know a family with a special needs child...offer support to the parents. Pray, pray hard for those relationships.

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I talked with someone recently who is the process of getting a divorce. They have a special needs child. I cannot get them off my mind. I cannot stop thinking about the overwhelming odds against us. My heart hurts for them, for families in similar situations.

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You hope and pray that through trials and tough circumstances, relationships are solidified not torn apart.

Respite

Jeremy and I have come to learn that having a special needs child means having to ask for help. Help is hard to find. A teenager in the neighborhood is not equipped to watch him. Getting out just to run errands can be a challenge, let alone Jeremy and I go out on a date. It can be overwhelming and extremely frustrating (I have blogged about this is the past, Help Wanted).

Thankfully we have some help through a waiver available to special needs children in Virginia. First we had an attendant, now we have a nurse. Still that does not mean our life is not complicated and hectic. Brayden is being well taken care of but it only covers the basics for us like the ability to run errands, tending to Carter and Luke and their school activities.

Yesterday, Jeremy and I had the opportunity to meet with director of Jill's House. The facility is the first of its kind; a place for overnight respite care and therapy programs. The building is such a special place and made for the children to really enjoy. With outdoor themed wings, sensory rooms, music room, swimming pool and so much more. The facility is planned to open sometime in the fall. Check out their webpage, Jill's House and facebook (watch the videos, they are good).

Where do you find your help?

A little update

The bed - Brayden is officially sleeping full time in his new bed. He really likes it. The mattress feels memory-foam-like so it nestles him in nicely. He seems to enjoy not staring at the crib bumpers. I have found him gazing towards the light of the window.
Jeremy and I broke down the crib...I had a little break down...the crib no longer a part of our life.

The diet - Brayden has been tolerating the ketogenic diet fairly well. His small daily seizures seem to be decreasing. However the moment I start to think that, he has a bad seizure day. But overall they seem to be less. His GI system does not seem to be aggravated by this new diet; just a few small things and we checked with his GI doctor and there is no concern. The formula mixture that we make (Ross Carbohydrate free formula, Elecare, Microlipid and water) seems to clog his g-j tube a bit so we need to flush his tube with warm water more often.

The nurse - Brayden now has a full time at-home nurse. She is with us about 40 hours a week. Brayden has already taken to her because the first day he got some good cuddles. We may also have someone with us over the weekends.

We have lots of other exciting things going on but I will be back to talk more about it later!

The fancy new bed

Brayden's new bed arrived. It is a hospital bed made to not look like a hospital bed, the Sleepsafe bed.

Brayden had a test drive in it. The entire bed can go up and down; head, up and down; feet up and down. It also has the rails on the side to keep him safe.

He will be sleeping with his head only slightly elevated, not as much as it is in the picture...I just had to try it out!

We have waited many, many months for this bed (insurance denials, lots of letters from doctors, etc.). I have not even purchased any bedding for it yet (the picture just shows the mattress). So Brayden is sleeping in his crib until I get it situated.

Anticlimactic Birthday

We did not prepare much for Brayden's birthday. For anyone that knows us, we do big birthday parties...we love parties. About a week before Brayden's birthday, we decided to have a party. We invited our immediate family for dinner at a farm.

Carter and Luke were a big reason for the party. They wanted Brayden to have a party. Their thoughts:
Carter: Who will open his presents? Well, Luke and I can help.
Luke: Will he have cake since he is allergic? (Luke's version of why Brayden cannot eat by mouth)
Carter: Who will blow out his candles? I can do it, so can Luke.

The party day came. The wind was ferocious and cold. Everyone was huddled inside the old farm house. The ponies arrived. The children were outside riding. I was taking pictures of the children on the pony rides and then I walked back to the house. Brayden was totally alone in a room, just sitting there quietly, everyone else was busy with the party. It broke my heart. He was at his own birthday party but NOT at his birthday party.

I have no other deep thoughts about it, it just made me sad but still happy to celebrate his 3rd birthday.

Ever have a day when you are blue? Or purple?

I got a call this morning from Brayden's school nurse. She wanted to check and make sure Brayden was doing okay. The nurse was concerned because he was literally looking blue.

Do not adjust the color on your screen. His feet and hands are this color...blue/purple.

Some days he does not have proper circulation. It is like his brain does not seem to be telling his body to get blood to his hands and feet. Then when it does, it seems to over compensate and pump so much blood that his hands or feet get really swollen and red.

It never looks good and it always concerns people (especially random strangers in stores who like to offer their insight). We try to rub his hands and feet to help. It is not about him being cold or hot. Without any known cause he has days when he is fine and others he may be purple or red. We have talked to all of his doctors about this and they have yet to offer any insight.

Happy Trails, Happy Birthday

Brayden celebrated his 3rd birthday (bear with me, lots of pictures). A party with family at Grandpa Warren's new farm. The old house is in the process of being renovated but still provided good shelter from the cold winds. The kids did not seem to mind the cold. Some rides on the ATVs and lots of pony rides. Brayden attempted one circle around for a pony ride...not too thrilled with it.

He was trying to check out his cake.

Then checking out a present.

It was a nice 3rd birthday. Luke came home and declared that it was the best kind of party and he was going to have all his parties there.

Bring in the noise

Brayden's 3rd birthday is Saturday, April 17th (pray for good weather because the party is outside at a farm). Today he celebrated his birthday at school.

I am usually ready to send something into the boys' schools to celebrate birthday...usually some cupcakes or cookies. But what to send in for Brayden's class (since he does not eat by mouth)? I found brightly colored maracas! Most of the children like to make some noise! We tied a little message and sent them to school!

The teacher let the children choose their color. They sang Happy Birthday and For he's a jolly good fellow for Brayden!

Registration

Kindergarten registration for Luke, the middle child. Why am I blogging about this?

Here is the story...

We live in a small town, part of Northern VA. We have a very small elementary school with limited capacity. A few months ago, a rumor was circulating about the upcoming kindergarten class. There is only room for one class, about 25 children. Based upon the survey of our town, there are approximately 40+ children eligible for kindergarten. What happens to the children that cannot fit into the elementary school? In the past they have been bused to a neighboring town for school.

I must admit I panicked a little when I heard this rumor. So I called the principal. I told her the information that was being passed around. Basically she would neither confirm or deny the circumstances but did say that there was a concern because the school was reaching capacity. She told me that registration day was important...to be there early with ALL of the paperwork completed. She did not tell me how they would be making decisions about the amount of children.

Registration was at 9:00 a.m. yesterday. People started lining up at 6:30 a.m. Luke and I arrived about 7:45 a.m. and ended up about 12th in line.

So back to why I am blogging about kindergarten registration...

First, I cannot have all three of my boys at three different public schools. Carter in Waterford, Luke in a neighboring town and Brayden in Leesburg for special ed. I cannot do it.

Second, I had no idea how valuable it was to be in our local school. I really know the teachers, staff, children and parents. There have been countless times that some incident happened with Brayden and Carter (who is currently in 1st grade) had to go home with someone else. His teachers and the parents know our circumstance and have been incredibly helpful. I know that even if some emergency comes up for Brayden, my boys will be okay and will be close by.

We will not know much about the kindergarten class for next school year until August. I have done everything I can to ensure Luke is at our local school. I talked with the kindergarten teacher and the school principal about why we needed Luke to be in Waterford. For now we just wait.

Luke is thrilled about kindergarten. He so desperately wants to be there and ride the bus with the kids in our neighborhood. He was so excited about registration that he even let me take his picture (he is more excited than he looks, he carried that paper around all morning).

3 year check up

Brayden had his 3 year check up this morning. He is growing! Some where around the 50 percentile for height and weight. He was not too pleased with being examined or getting a shot, apparently it wore him out because he slept most of the day.

Luke joined us this morning because he had his 5 year old check up (a few months late but we finally did it). In preparation, he dug out the doctor kit and gave Brayden a once over while I was loading the car.

The ketogenic diet seems to be going well. I am still getting the hang of things...hoping to pick up some speed because right now everything takes me too long to prepare. We measure out this concoction of different things to make his formula for the day, check his blood glucose three times a day and ketones (urine dip stick) 1-2 times per day, in addition to all of his other needs. The diet does not seem to be aggravating any of his GI problems. As for seizure control, only time will tell...about 2ish months before we may see an impact on his seizures but the doctors cannot really say how long.

Home, last night

Brayden was discharged last night.

He was discharged at 5:00 p.m. The worst possible time for DC metro area traffic. Brayden and I were in the car for almost 2 hrs 45 minutes before we pulled into the garage. Brayden just seemed happy to be out of the hospital.

He is home.

His hospital stay was mostly uneventful. He tolerated the ketogenic diet fairly well. A few things that we need to check on but nothing too bad.

Brayden seems to have a seriously low heart rate and pulse ox several times during his sleep. Thankfully he is able to recover on his own but a few times they did put him on oxygen. We will talk to his regular doctors about this since it does not seem to be ketogenic diet related. He lipase levels (pancreas) are elevated but not sure if that is normal for him so we will visit the GI doctor.

He was stuck so many times for blood that it looked like Luke played doctor and covered him with band aids. Just about every nook and cranny was used for blood. Brayden only fussed for a moment with each stick...apparently getting too used to it all.
Last night and this morning was my first go at the measuring of the diet, glucometer and ketostix. A little stressful trying to figure it all out because this diet is so precise. We had a nurse out this morning to go over things and check him as well. So far so good but I am hoping that I will get the hang of things quickly.

How I do hospital stays...

Jeremy stays the night with Brayden. He is gifted with the ability to fall asleep just about anywhere and go into a deep sleep quickly. I arrive early in the morning before first rounds and stay the entire day. Carter and Luke are at school and home with grandparents taking shifts.

After several hospital stays, I have a few tricks up my sleeve to make it a little bit more bearable for me...

1. Magazines - they do not require much thought or attention span, since I am lacking that when lacking sleep.

2. Book - just one easy to read,usually off the bestseller list but I make no commitments to reading it all if it turns out to be boring.

3. Blackberry - I used to make fun of Jeremy (and all other Jenkins) who cannot function without theirs, mine is my new best friend and contact with the outside world.

4. Starbucks frappuccinos in bottle - our frig is full stocked with these. I have never been much of a person who needs caffeine but these are too good to resist.

5. Laptop with remote access - Yes, I am sitting here typing on it right now. I watched old Glee episodes, checked others blogs, read a couple of newspapers (the style sections), etc.

6. Gum - some how hanging out in a hospital room gives you cotton mouth.

7. Camera - do you need an explanation for this one?

8. A new addition is...

Mary Kay TimeWise Targeted Action Eye Revitalizer, claims to diminish dark circles and depuff. A stay at the hospital is a true test for this product.

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9. Money for the cafeteria and parking garage.

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10. Toys for Brayden and things from home for him.

Ever feel like you are being watched?

Brayden does.

Besides mommy and daddy hovering over him, the staff on the neurology wing are watching him closely.

At this Children's neurology wing (apparently not any other wing yet) cameras are in each room. The cameras follow the children throughout their room. A tech sits at a station 24/7 watching the children. Brayden is being watched closely for seizures. Kind of strange having a camera in the room...so no nose picking or making out with Jeremy (I know our families just cringed a little).

The monitors alarm to big seizures, which he had a couple today. His stats go crazy and several people rush into his room.

Brayden's blood glucose is being watched. This diet can alter it, he was pretty low this morning but got better throughout the day. His diaper has an extra pad in it to ring out the urine for a sample to check his ketones. Bloodwork is being done each day to monitor him and to watch closely his Lipase levels which is a cause of pancreatitis (which he has dealt with in the past). His lipase levels have been elevated but not too high.

Children's is a teaching hospital so Brayden is watched by medical students, resident, attending and fellow doctors. And the nursing students, nurses and techs. A dietitian (who will facilitate this diet in the hospital and out) and her intern. A case manager to set up all of his new gear at home.

The proper diet is slowly being increased to see how his body tolerates it...so far no major problems.

His sweet chubby feet that kick and make the monitor go off.

New diet, new hospital room

Brayden has officially been admitted to Children's National today. He will be there for the majority of the week to start the ketogenic diet. While the diet is primarily for seizure control, Brayden's GI issues cause concern and will be closely monitored for any red flags.

He was started late this afternoon on a mixture of the food he will get via j-tube and will work up to the proper ratio.

Tomorrow, we will be trained on how to carry out the diet at home, as well as the tests to monitor him.

We have been to this hospital many, many times; inpatient in the old GI wing and many outpatient procedures...this is the first time on the newer neurology wing. Brayden has a large private room, with private bathroom, two recliners and a couch (still the hospital like but better), a flat screen TV...need I say more. It is a far cry from his other hospital stays at Children's. He can even wear pajamas instead of a gown.

Brayden has been very compliant all day, not much bothering him.

Tomorrow is Easter

Jeremy's family is gathering at a local restaurant after our Easter church service tomorrow. I received the email this week about when and where; when I read the email I cringed and my heart sank. No, not because of the restaurant choice but because of a memory.

I immediately thought of the last time we were there for the Easter meal. Brayden was 11 months old. I was nursing 6-7x a day for an hour at a time. We were in the battle for him to gain weight because the decision of a feeding tube was looming (he got his first feeding tube at 13 months).

That Easter, we arrived at the restaurant. It was time for Brayden to nurse, yet again. But he was asleep.

He is my third child. I have learned...do not wake a sleeping baby. Not just for his sake but mine; nursing that many times a day leaves one very hungry.

We loaded him into the stroller...still sleeping. I thought I would be able to eat quickly and then nurse him. Once we entered the restaurant, someone woke him up by poking at the sleeping baby. He woke up upset and hungry.

I scooped him up, said something not kind to those around me and stormed out to the car. I could not nurse him out in public because he did not curl into me like most babies do and required more space than a hooter hider would hide anymore.

That was a moment for me. A moment when I realized that I could not handle it anymore. I was tired. Tired of nursing, sitting in the car alone to nurse, dealing with all of his special needs, of fighting and praying for weight gain. It was a breaking point for me. I felt ugly and broken inside. I wanted to snap at everyone because they were not dealing with what I was dealing with and they did not seem to understand.

I sat in the car, angry and had a full on pity party. Easter is a family day and I was alone in the car with my broken baby and my broken spirit.

What comes to my mind? A hymn that I grew up singing on many a Easter morning.

He Lives!
Alfred H. Ackley, 1887 - 1960

I serve a risen Saviour; He's in the world today.
I know that He is living, whatever men may say.
I see His hand of mercy, I hear His voice of cheer,
And just the time I need Him He's always near.
Chorus:
He lives! He lives! Christ Jesus lives today!
He walks with me and talks with me along life's narrow way.
He lives! He lives! Salvation to impart!
You ask me how I know He lives? He lives within my heart.
Stanza 2:
In all the world around me I see His loving care,
And though my heart grows weary I never will despair.
I know that He is leading, thro' all the stormy blast;
The day of His appearing will come at last.
Chorus:
Stanza 3:
Rejoice, rejoice, O Christian! Lift up your voice and sing
Eternal hallelujahs to Jesus Christ, the King!
The Hope of all who seek Him, the Help of all who find,
None other is so loving, so good and kind.

Breakin' up is hard to do

Today was the last day for Brayden's attendant. She has been with him for just over one year. Brayden quickly took to her and figured out how to get her to cuddle him (a fake cry to get what he wants). He likes to rest on her shoulder. Brayden knows how much she loves him (and he has taken full advantage of it).

Brayden and his attendant enjoyed some quality time at the park today.

Brayden will now how full time nursing care. It will start after he comes home from the hospital stay.

A connection

Yesterday I had lunch with a very special lady. She has a teenage daughter that has special needs; she has dealt with seizures, major seizures.

Through a series of events and conversations, one can only conclude that this meeting was a gift from God. See this woman I meet with, is a pastor's wife of a very large church in our area and I am sure her schedule is very protected. On very short notice she was able to meet me for lunch.

I expected myself to feel intimidated and/or nervous to talk with her. But the moment we sat down, the conversation took off. We talked for almost an hour before we realized we actually needed to order our food. We shared many stories, found humor in some of the crazy circumstances that our children have brought us, shared struggles, how to deal not only with our special needs child but our other children as well, and much more.

Her daughter has gone without a diagnosis for most of her life and had so many seizures that were life altering. She tried the ketogenic diet. I asked questions about the diet, seizure treatments, doctors, tests, etc.

This lunch with this woman was just what I needed. I felt completely understood, without explanation and I felt comfort without the pity sympathy. I appreciate her time with me more than I could put into words. I could have sat and talked with her for many more hours.

We have oxygen

A delivery for Brayden today...some oxygen.

Oxygen is now at our home. It is to be used when Brayden goes into his big seizures. The past several ER visits, his O2 stats have been too low and he has been put on oxygen. His seizures have been causing problems, thankfully only once or twice a month.

We live in Waterford about 20 minutes (no traffic) from the local hospital. The local EMTs always arrive quickly but we have to wait for a medic to arrive which comes from one of two neighboring towns. By the time we have to call 911 and get moving in the ambulance is at least 20-30 minutes, then a drive to hospital...that is a long time.

So now we have oxygen and a pulse oximeter for our use, along with all of the attachments. Thankfully Brayden's room has a walk-n closet to store all of these things but it is looking more like a storage closet for a hospital.

AFOs

Brayden was fitted today for his first pair of AFOs. A cast is created for each foot in order to create the proper mold.

The AFOs will not be used on a day-to-day basis, thankfully he does not need them for that kind of assistance. He will use them when attempting a stander. To give him stability in his feet and ankles.

I have to tell you that getting the AFOs is a little difficult for me. Not because of the process of having him fitted in a cast, cut out of them or coming back to get them later. It is because they are so stereotypical of a handicap kid. The handicap kid with leg braces. Yes, I know that this is being totally superficial...I am aware. But the look of them...well not attractive. Although you can order them in fancy patterns and colors (we just ordered blue).

It just seems to add to the whole disability thing in a very visual way.

Now we have to get him some shoes that his chubby feet fit into with the AFOs and possibly some cool AFOs sock (knee socks). He will receive his AFOs in about two weeks. I am sure he will be thrilled.

(sorry the pictures are bad, it was with my phone)

Brayden's changes

I have not had much of a chance to sit down at my computer for several days. Most of my time has been on the phone.

First for scheduling. Brayden is officially scheduled to start the ketogenic diet. He will be admitted to Children's April 5th. He will be there for at least 4 days. He will be closely monitored not only to start this diet but also because of his unexplainable G-I history/problems. He will be doing this diet through his G-J tube, and I have yet to find parents that have done this diet via j-tube (so if you know anyone, pass them my way). We are working to get things set up for his life on the keto diet.

Secondly, Brayden's waiver. Boy, I have been on the phone way too much about this. In Virginia, Brayden is currently on something called the EDCD waiver. He got on this waiver before he even had a feeding tube and was only on a few medications. Since that time, Brayden's medical needs have escalated. He waiver is being re-evaluated, adjusted, whatever... What all of this means is that Brayden will no longer have an attendant, he will receive nursing care. After coming home from the hospital, Brayden will have two nurses that will be at our home to assist with his care.

The transition of things two things has been very time consuming. I have talked to many people at VA DMAS, local case worker, local department of health, the doctors, several nursing agencies, the hospital and more. I talked to all of them several times, collected lots of paper work and had a few meetings. All the while trying to navigate these changes with the least amount of problems.

To recap, Brayden starts the ketogenic diet and will be receiving full time nursing care at home.

Green Kisses

Happy St. Patrick's Day.

Brayden came home with his St. Patrick's Day art project. Painted by him.

Leave him a St. Patrick's Day kiss in the comments (cause you love his t-shirt and those kissable cheeks)!

Change the tube

Brayden went in today for a tube change. Out with the old G-J (which I think actually smelled funky this time) and in with the new G-J (which is so shiny). The tube change requires a trip to the hospital for time in radiology. Since the tube must be placed into the intestine properly, die and a wire is used to insure proper placement.

Changing the G-J tube is something that we do many times a year. Brayden is always adorable in his little hospital gown. The hard part of changing the tube is pulling out the old tube. The tube almost becomes a part of his body so the radiologist needs to really yank on the tube to pull it out. Did I mention Brayden is awake for this on the radiology table? Sometimes this causes so much discomfort for Brayden that he screams and no sound comes out...not fun and not fun to watch. Can you imagine the feeling of having a long tube yanked from your body, through the intestine, stomach and out a small hole in the muscle and skin? I get shivers thinking about it. Thankfully it does not take too long.

Brayden is just bothered by the yanking. Immediately before and after he is absolutely fine, in fact happy today, tossing around some smiles.

School is so beneficial

I spend my Sunday nights getting ready for the school week ahead. It takes a lot of get three boys ready for their school week...each in a different school and all of their activities.

Carter is at our local public school in 1st grade. Luke at a church preschool about 20 minutes away. Brayden at a public elementary school about 15 minutes away; he is in special ed preschool.

This school year has been interesting. For one thing it has affirmed my thoughts that school is extremely beneficial for children (a.k.a mommy not being the teacher). While I know that everyone needs to choose their child's educational path based upon their families needs, for me sending them to school has been a great decision.

Carter's reading and math skills have grown leaps and bounds. His teacher can get him to read some great stuff. When I read with him at home he gets frustrated. Carter has become a leader in his class and learning to choose good friends. Our rule...you do not have to play with everyone or be their friend but you have to be kind and respect them.

Luke is ridiculously ready for kindergarten. His preschool has been great. He educational skills are kindergarten ready. He is learning self control. He is a well behaved child but tends to speak his mind...whenever a thought comes...which means he talks a lot. Luke has to learn the appropriate time to talk and taking turns.

Brayden has been maturing tremendously. He tolerance for new things, they do not frazzle him. The teacher, aids and therapists do all sorts of activities with him...things that not in a million years I would try with him or even expect him to be able to participate.

Bottom line, having teachers and others adults at school has huge benefits. They expect different things from our children. They see them differently than we do as parents. They push them in a way that I could not being a mom/teacher. They have tremendous patience and many innovative ways to reach our children.

Being around other children on a regular basis has many benefits. Not only the sharing, taking turns, working together but comfort in having friends. Brayden even seems to recognize those in his class.

I am so grateful for our teachers!

Busy week

I have not blogged much this week because things have been busy.

A good busy, for the most part.

The week started with a meeting about developing a fully accessible park in our county. I have been thinking, researching, googling a million ideas. We met with a playground equipment company to help give us some ideas and hopefully direction. Still so many things to be decided to even decide if we can pull this off.

On and off throughout the week, I have been on the phone with Children's. We are now scheduled for Brayden to enter the hospital in April to start the ketogenic diet. He will be in the hospital a bit longer than typical keto kids because of his G-I history and pancreatitis...all of which will be watched closely.

Because Brayden's medical needs have changed so much in the past couple of years, the waiver that he is currently on is being re-evaluated, with the idea to update to his current medical status. This is a pain. No one seems to know the correct process. I have talked to countless people...way too much time on the phone.

Yesterday I had a meeting to discuss ideas about collaborating on a book. A book that would share three stories. Each story from a mom of a special needs child and navigating their life. I am not sure where this project is heading but it is a possibility.

Not to mention our regular activities for Carter and Luke...Brayden's appointments, etc.

Today, I will actually run to grocery store and some other errands and it happens to be the day when it is pouring down rain!

Like my shadow

Sometimes I see a lot of it and sometimes very little but it is always with me.

I heard this phrase last week and it stuck with me.

I was out to dinner with some friends last night. We have been talking about sharing our stories and the best way to portray our lives.

One of the most important things we realized is that our life is not all about grief in dealing with a severely disabled or medically fragile child. It is not a moment that we need to "get through". It is not a challenge/adversity that we come out the other side of and feel free or without struggles.

Many of us have received books on grief, praying through the tough times, getting through the storm...all of which have their time and place. It is certainly something that is part of the process but it is not something that goes away or even runs our life. It is hard to have your child struggle with basic things like eating or motor skills. But when you child snuggles in to you, it is a moment that you would not trade for anything.

We have a very strong ebb and flow in our life. Sometimes it is heavy with grief and struggles; other times with tremendous joy. Sometimes things are really rough and other times things are calm. We miss the things that we do not have but we love the things that we do.

The sorrow and hurt can creep up when you least expect it. Sometimes I find myself consciously pushing away those thoughts. Then, at times the struggle is in the obvious, when unwanted test results come back or having your child go through yet another medical procedure. It is hard to see you child put through so much and there is not much you can do as a parent to stop it.

We appreciate the little things in a entirely new way and savor it all. This life has changed so many of us...made us better people...love a little more deeper...more reliant on our faith. Having those struggles does not mean our faith is lacking it is just part of our life moving forward.

Having a child with severe disabilities, a disease or medical problems has its struggles...for me, it is like my shadow, some days I see a lot of it and sometimes very little but it is always with me.

Luke and Brayden

Luke asked me if he could get Brayden off the bus. I said yes. He ran outside and waited at the end of the driveway. I yelled down to him that the bus was not coming for another 10 minutes. He said that he would wait and watch so he could be right there for Brayden.

And he pushed Brayden up to the house and on to the lift in to the house. Luke told me that Brayden preferred him to do it rather than mommy.

A day later, Luke decided that he wanted to play board games. I told him that I could not because I had to do some things around the house. He quickly replied that he did not want to play with me but Brayden.

They played a round of Candyland and Guess Who. Luke encouraged Brayden right along, "Good job Brayden, you are winning!"

Luke is the one who most fills in for Brayden's lack of words. Sometimes proclaiming that "Brayden wants to watch a movie!", really it is what Luke wants. Brayden does not seem to mind at all and likes the attention/entertainment that Luke provides.

This is NOT what I expected my life to be

We all have expectations for our lives.

I mentioned that I was reading through old blog posts and emails, I realized I wrote a lot about expectations, things that were happening that I did not expect.

Here are some. I am sure that you can relate to at least a few of them.

• I never expected to have a child with severe disabilities
• I never expected to know this many doctors or hospitals so well
• I never expected to have medical equipment as part of my home and daily life
• I expected all of my children to talk, walk, hug, (eat, not by tube), etc.
• I never expected to hurt this deeply
• I expected myself to be a mom that could handle it all...I cannot
• I expected to be there always for all of my children...Carter and Luke sometimes get lost in the chaos of things, even though they are understanding about it all
• I expected my child to be able to cuddle...Brayden did not until 21 months
• I expected to go on many vacations as a family...that left stress at home
• I expected doctors to have answers and not be the one making major medical decisions for my child
• I never expected to need this much help. I was a social work major in college, the idea of helping others and I am the one getting help from every direction.
• I never expected asking for help would be so hard
• I expected certain people in our lives to help (I learned that my expectations for them were apparently too high)
• I expected my neighbors to be snobs (sorry gals) but thankfully I was seriously wrong
• I expected Jeremy to feel the same as me, after all we are in this together. However things that bothered him, did not bother me. And things that bothered me did not bother him. Which turns out to be good because then we could support each other
• I expected to know how to pray (I will have to blog about this one later)
• I expected prayers to be answered...at least to find an end to the vomiting

I could go on and on. Clearly this is not what I expected my life to be.

Thankfully God surpasses all of our expectations and I am learning that a little more each day.

Have I let go of my expectations? I wish I could say yes but I am trying...