A Gift

On the way to our niece's birthday party today we talked about how Ava went to the hospital on The bigger bugs' birthday (say that 10 times fast). They were expressing how they were sad that she got "sick" on that day. They asked my why she was crying and they were thinking that it was because she didn't want to leave them.

I confided that I have been upset about Ava going to the hospital on their birthday as well. They each confided that they are sad and upset about it too.

I told the bugs that Ava was probably crying because she couldn't breath well and that she was uncomfortable and needed help. Then I realized that I began to notice that she was having intermittent issues since the Thursday prior to her admission. She has a doctor appointment on Thurs, and was said to be fine. I went back to work Fri, Sat and Sun. her breathing was eating at me and I was hoping that she would make it through the weekend. I have been beating myself up that I didn't get her help sooner. Knowing that the only thing that I would have done was bought a few more days away from home.

It dawned on me. Ava was fighting her way thorough and I thing she was trying to stay with us the best she could. She was home on the bugs birthday. They got to hold her, kiss her and love her in their arms. If she went to the hospital anytime sooner, they wouldn't have been able to even see her. There were no visitors under the age of 16 at the time due to the H1N1 Virus. I told the girls that Ava tried to stay with us as long as she could. Her little body needed help but she fought long enough that they could be together on their birthday.

As I write this I realize that since I've been focused on the negative of that day I missed the fact that Emily and Alexa and Elaina got to each hold their sister for the last time, on Emily and Alexa's Birthday. The pictures we have are solum. The bugs knew that this was big. But the gift that they were given was priceless. What a present.

Onions and J-O-Y

Trying to get back in the swing of things is hard. I think about how much more difficult it will become as we absorb the responsibilities of our "usual" life. I am exhausted and have a low threshold for things that bother me. Poor Allan, it's like he is dealing with pregnant me. He was hoping to not have to do that I suppose. I want the broken or the breaking things in our house fixed NOW. If it's annoying me, I want it taken care of. I find I just don't have the extra energy to expend on that "fluff". (Drafty windows and a new roof isn't "fluff"', but kids stuff everywhere, a broken phone, a not functional storm door, and clothes that don't fit right could be considered as such).

The little reserve I have is to go into the ladybugs flitting around the house. They will usually stop for a hug and an 'I miss Ava'. Their regular conversation these days consists of: 'Look at the picture I'm coloring. I'm coloring in the lines. We used to have 5 kids and now we are back to 3. These are yummy mashed potatoes.' Sometimes I can deal with it OK. Today it's like little daggers in my heart.

I always wanted to have four kids. I've given birth to 5 wonderful little bugs, but I so wish that I had the opportunity to raise them all. When we found out we were expecting Ava to say we were surprised would be an understatement. We were thrown for a loop thinking that our family was complete. I went through a lot of processing to come to terms with having another one right now. When I was younger I wanted 4, when I came to terms with the surprise, I still wanted 4. I really think that we would have done a great job that the craziness of 4 would provide. I hate that I will never know now.

It's those thoughts and feelings that are piercing and raw. Every time I peel a layer of that onion my eyes sting and burn as I get closer to the heart of the matter. I can't look at the whole thing all at once. I think I'd blow a gasket. I keep saying that I can't do it anymore and how much more can I take. Yet here I sit, still doing what I feared the most and still taking it. Sometimes way better than others, none the less, taking it.

Allan and I were noticing that this time around we feel way more present in life than we did when Eric died. That is a blessing. We have to be. We have three active, wounded, and still happy ladies that we have to care for and nurture.

My soul is nurtured by God. I need someone to nurture my physical being. My body is sore, my mind is dull and my heart is so very broken. It is amazing to me how a simple (tongue in cheek) task, like taking 3 kids to church, and eating lunch can take all I have out of me.

I find that I am trying to rush each day to get to the next. The next holds the same loneliness and sorrow, but as the song says, "His joy comes in the morning". I keep looking for the glimmers of that joy so I can hold on and get to the next step. Sometimes it's so very intentional. We have a huge JOY sign in red on our front lawn. In the center of the "O" is Mary, Joseph and Jesus in white. Whenever I leave or come home it's there, in my face. J-O-Y and why we can have it. Sometimes it has to be blatant to be effective.

A good day

This morning Allan and I want to the biggest bugs pre-school Christmas Program. (I mistakenly called it a concert once to which Emmy corrected, "Mommy. It's not a concert. It's a PRO-GRAM). It totally warmed my heart seeing the girls sing songs about the birth of Jesus. They were so excited. It was awesome to see all their friends and all they worked so hard to do.

After the Program we were off to see littlest Bug. We really never know what we are going to walk into. We did our usual check of her "numbers" on all the monitors, scrub and kiss the little miss. We were surprised to see that Ava looked way more comfortable than she did last night. Her heart rate was well within normal today. ALL DAY. I then grabbed her hand. She squeezed mine and pulled on it. She had Physical Therapy and her therapist had tears in her eyes as Ava was responding to her touch, moving more and allowing her to do way more massage and range of motion than she's ever tolerated before. She finished by saying, "Ava's stronger today."

We are not reading much into this but for confusion. Yesterday we expected that Ava would be even weaker today than she was yesterday and her time with us would be coming to an end soon. Clearly today was not that day. Ava has more to accomplish. We truly just enjoyed her and enjoyed being amazed by her character, tenacity, and determination. She truly is a special little bug whom we are honored to love and know.

Of course we don't know what we will encounter tomorrow, but we will relish the gifts from today: Em and Lex signing, extra cuddle time with Elaina, and extra finger squeezes from Ava.

Ava had a good day while we were with her. She seemed fairly comfortable and looked OK, however her heart rate was really high. That usually has to do with her positioning, or temperature. She got a massage and repositioned and seemed to settle down a bit. We were happy about that. We really wanted to hold her and didn't want to if her heart rate was so high. We were only able to stay for part of the day (9:30am-4:00pm) today. So Allan was the one who got a turn holding our sweetie. (OK, she is sweet, but is still a little salty).

It's been rough around our house for the last 24 hours. Alexa is having more issues with her asthma than normal. She was up last night from 1:30am-5:00am. This wouldn't have been too bad except I was up making "Ava Bracelets" and lost track of time. I just crawled into bed at 1am. At some point Elaina woke up and then Emily did too.

Despite exhausting all the tricks in our "Asthma Arsenal" Alexa did not respond like she usually does. Our pediatrician came through and called in a prescription for an oral steroid. This seemed to do the trick. We are just so grateful for that. Tonight was birthday party for a special friend at an inflatable party place. They so needed to do that. While I was up holding Alexa on the couch last night I just kept asking God to allow her to go.

I spent the night wondering if we were going to walk into a baby who has taken a turn for the worse. I was worried about Alexa and leaving her in that condition, knowing an ER visit was soon to be on deck if something didn't give. I was so concerned, as we have successfully managed all asthma flare ups and stayed out of the ER. I could sense that she was scared of the prospect of needing the care of a physician and Emily was so worried about her sister.

The steroid did the trick and off the the party they went under Daddy's watchful eye. They were given a strict warning that Daddy may make them take breaks and lay low for a bit. The report is that no one so much as coughed. I am using plural here as Emily was beginning to show signs of starting down the same path.

I stayed home with Elaina and had time with just her. She now has a fever and a runny nose, so I just held her and she watched her favorite shows in my lap. We even shared dinner. During her bath I made a duck noise (I'm multi-talented). She told me that her pediatrician makes that sound. I don't remember the last time she saw him, it's been a couple months, but he makes that sound when he looks in her ears. She then told me that he takes good care of her, "because I don't like those tubes in my nose." I asked her who has tubes, she said, "Ava". I asked her if they hurt her or if she is managing OK. She said, "She managing OK." I then asked her if they helped her or hurt her. She told me they helped her. Later I asked her if her ears were broken. She told me no. I then told her that she is big and strong.

So we tucked three borderline not feeling well little bugs into bed tonight. Two were coughing, but have stopped. I hope I get to sleep tonight, I am so emotionally drained and now physically tired as well. I am always wondering if today will be the second saddest day of my life and what choices we are faced with making. Today, I was fully prepared for it to be "the" day. Ava decided to peer open one eye (for the first time in 2 days) and respond to us with smiles and pleasant faces.

I struggle with how to bridge the ever growing gap between the medical team and us. Today not one physician came to chat with us. We are invited to participate in morning rounds, something that we have never wanted to do, but I am thinking that it is now necessary. I do not like the notion that they are thinking all that is happening to Ava is "progression of the disease" and that they are just waiting for us to give "the word". We know that this is progression of HER disease and we would like someone to think about ways that will help her be more comfortable.

We feel like God is asking us to "wait". So we are. We don't know why, but we do. I am trying to stay in each moment and not think down the road. When I look down the road I find I am focusing on my agenda and not relying on God's Holy agenda for us.

Family Fun

The bigger bugs descended upon the PICU today. They were so loving toward their sweet and salty sister. Ava clearly loved having them here. Her countenance changed. Her heart rate went down and she made pleasant faces. It was something they all noticed and I will forever cherish. Elaina held her sister's hand and said, "She love me." She sure does!

We also had a little family craft project time. We made four hand prints on a piece of paper which we will frame.

Our time together as a family of 6 was happy and enjoyable. No one was sad. It was beautiful.

We sure do love our bugs!

Planning?

We enter today without much of a game plan. We have a loose idea of who goes where and how that will occur, but one the biggest bugs come fumbling down the stairs in all their sleepiness and chaos we won't know for sure. For someone who enjoys an action plan and a schedule this prospect is a little unsettling.

We have 3 sickies at home right now. Two are gloppy and in the midpoint. The other is a couple days in. She tends to be the worst sick of the bunch so it's not going well. Last night we were up about 3-4 times with fever, coughing, throwing up mucus, and a jammy change. We have often said that when Alexa gets sick, the whole house needs to be up. 4 out of 6 ain't bad. When she was three she would not go back to sleep. She would cry and cry and cry. She'd have to go potty. She was scared of a bug. We thought she was exaggerating. After about 2 hours we here this little voice crying out "I need a little love. I need a little love...." (Turns out that girlfriend had an ear infection. Oops). This is what we are faced with when Alexa gets sick.

Last night, Emily was keeping vigil for Alexa. She would rub her back and hug her. She would try and give her snugly toys. She cried and she prayed for her. We had a little chat at 3:30AM. Emmy was worried for Alexa. They always are for each other, but this time it was different. They were afraid that if they got sick then they would end up looking like Ava in the hospital. We touched on this topic before just in case their little minds spun out of control while I was unavailable. We talked about being big and strong and able to fight germs. We talked about how the tubes in Ava are helping her stay on earth with us. So even though they are icky, they are helping our baby. Necessary conversations that I don't mind having but really don't want to have to. Of course the poor kids have a social worker for a Mommy so, 'How do YOU feel???'

I was thinking that I was going to have to call the pediatrician and take some permutation of ladybugs in today. Questionable ear pain, various eyes tinted pink. However, it seems that some of the residual stuff is clearing for Elaina. Let's hope it's the same for the other 2.

So I have no idea which parent is headed to the PICU and which is headed to the pediatrician before the various childcare providers arrive. AHHHHH! I sure wish I could be split. Allan and I are going to have to play rock paper scissors to see which duty is the short end of the stick.

Hopefully when the bigger set emerge I can save a copay and hit the road.

As I type this Laina is feeding me homemade clay cookies before I've had my coffee. YUM. She's also been told that clay stays in the kitchen. So she's dancing around singing, "I in the kit..chen, I in the kit...chen."

"Elaina, please don't lick butter off your pancake."

"Elaina, please don't butter your hand."

"Elaina, please use your fork or spoon."

Elaina reprimands me for calling her knife a spoon. "Mommy, why you call this a spoon. It's a knife." Elaina gets a spoon out of the drawer and proceeds to pick her peaches up and put them on her spoon to take a bite.

I love breakfast.

Mission Impossible

Depart: 9:20am
Destination: Pediatrician
Mission: Flu shots for 3 ladybugs

In the car at 9:16am. Mommy and Daddy high five. Emily cries from the far reaches of the minivan, "I need a snugly toy". Two others chime in. Requests bounce around. Daddy opens the just closed garage door. Mommy runs in to retrieve Kitty, Dogie, and Baby-with the orange shirt.

9:18am- snugly toys dispersed and we are on our way.

Everybody was fine until we hear our names called. Emily and Alexa's anxiety levels increase. Alexa throws her sister under the bus and volunteers Elaina to be first. Elaina doesn't care she's getting the flu mist.

Aside from screaming, writhing and screaming "I want to go home. " "Don't make me do this", etc etc all were vaccinated and they were unscathed. Mommy and Daddy, not so much.

Off we went to the mall to spend our five dollar bribe money at the Disney store. (One had to cooperate starting with getting up, dressed, and out the door). We held a loose definition of cooperate when it came to the actual vaccination: Did Mommy require a trip to the chiropractor as a result of the flu shots? Not this year.

After 1 1/2 hours of indecision we came home with 4 kids, 2 boo-boo arms, three stickers, a Snow White doll, a Tigger phone, flashing Cinderella shoes, and 2 giant headaches not cured by the comfort coffee.

Mission accomplished. To what end, we don't know.

Today was laundry day. There used to be a time when I could just throw a load in and cycle it through and viola! Clean clothes. Now it has become a declared effort. It amazes me how many literal roadblocks occur between the family room and the laundry room. Today, as with every day,I make verbal lists: First you get your Blueberry Special K with milk, then I pour my coffee, then I pump and then we fold the laundry. Three bowls of "Blueberry K" and a bowl of Chocolaty K for me and three bowls of dry plain Cheerios later, the coffee is not poured, the baby needs to eat and no you may not take your cereal in the family room. No you may not either. No you may not either! The laundry sits.

It's late morning possibly noon, the clock in the kitchen needs new batteries so how do I really know? I declare, again, that today girls, we will FOLD. I get the baskets and commence. The baby is FINALLY down, after eating and eating and eating. Today was make up day after shot day apparently. The girls are getting hungry. Elaina is standing in my lap hugging me and generally wiggling. She says she's helping. Emily actually is, that girl can fold. Alexa is 2 feet away, coloring. At least she is not on top of me or some how in between me and my piles. Next thing you know I am banished from the kitchen. Emily and Alexa are gone and Elaina is still "helping".

I am summoned. At this time there is more folded piles than clothes in the basket. There on the kitchen table are 4 deli sandwiches, made to every one's taste. I tell you it was the best, and messiest lunch I ever had. It was Alexa's idea. She wanted to help me get the laundry done.

After lunch I was cleaning up the mayo off the floor and the mustard off the table. Now I'm banished from the family room. Emily, Alexa and Elaina took their clothes piles and put them in their respective drawers.

I really wished I took a picture of our lunch today, especially of Elaina who was playing in the mustard blob Emily put on her plate as a fun surprise. I now know where Dr. Seuss got his idea for the pink snow from. It's amazing what a very little dab of mustard can turn into.

A little normalcy?

7 am: Mommy out of the shower. Ava cries. Mommy gets dressed. Elaina makes wake up sounds. Mommy runs downstairs, pours coffee, sets up changing station for Ava, checks email. Ava screams. Mommy runs upstairs, gets Ava, gets her dressed. Ava screams for food. Elaina is fully awake and is going to wake up Emily and Alexa. Mommy and crying Ava go into Elaina's room. Her diaper leaked. She wants to read Ava a story. Mommy starts to nurse baby while Elaina "reads" to Ava. Phone rings (it's 7:38 so Mommy needs to see who it is). Crying baby, soaked Elaina and Mommy back downstairs. It was Daddy. Elaina goes to get her morning drinks. Juice and Milk cups not made last night as the dishwasher was run a little later than usual. Apologetic husband. Ava starts to actually eat, gross wet Elaina cuddles me. Thirsty Alexa comes downstairs. Agrees to wait for Ava to finish eating to get her drink. Mommy, Ava, gross wet Elaina and Alexa are now all on the same couch cushion. Alexa cuts her finger on a rivet on my jeans while trying to tickle the nursing baby's feet. Crying Emily emerges from her slumber. No room to snuggle. Temper tantrum on floor. Offer to make space. Still crying. Ava's still nursing, Alexa is still thirsty and Elaina is still gross. Emily makes snuggle space, now 5 people are on one couch cushion. Ava goes into a food coma, won't burp. Mommy gives Ava to Alexa. Gross Elaina stays on the couch. Emily follows Mommy to get juice and milk cups made, get a band aid for Alexa's bleeding finger and a diaper for Elaina. Elaina gets changed. Mommy goes up stairs to get an outfit for Elaina. Runs downstairs to a hysterical Alexa. Ava spit up all over her. Ava wiped off, Alexa stripped and wiped off. Alexa goes upstairs to get dressed. Emily holds Ava while Mommy finishes dressing a naked, but diapered Elaina. It is 8:05am.

Crazy sometimes just feels good.