Super Powers

If I could have any super power, I'd choose the ability to time travel so I can go back and hold my son again. I know I can't change things but I'd like to hold him again. I want to hear his laughter and watch him sleep. I want to smell him and feel him and read to him. I want to rock him to sleep as I sing our night night song. I want to tickle him until he can't laugh anymore and begs me to stop.

I want to lay on the kitchen floor with him and race hotwheels down our slopped floor. I would go back in time so we could set up more intricate train tracks. I'd go back to the day he learned how to jump in his squeaky shoes and watch his smile spread from ear to ear. I'd go back to the day he took off walking for the first time in  the doctors office just a month before his second birthday.

If I could time travel, I'd go back to the day I first got to hold Liam. Knowing I couldn't change the ending of his story, I'd go back and make things even better. I'd throw caution to the wind and take him for ice cream more often or I would take him to the zoo and Disneyland.

There's so much we didn't get to do because there was always the worry of what could happen. We let the what if's get in the way of living. So many nights I cried myself to sleep because he couldn't sleep in bed with us since he was on a feeding pump and it was "too much of a hassle" to move the pump to our bed.

If I could give one bit of advice to anyone with a medically fragile child, or just a child in general, it's to take that extra step. Don't let that pump or oxygen machine get in the way of your desire to cuddle your kids. It won't harm them to let them sleep with you every now and then.

 Don't let the what if's get in the way of you living your life. Of course don't let all your guards down, but take that extra effort to make special memories. Forget that load of laundry that needs to be folded and race those hotwheels or have that tea party. Let them have real tea in real porcelain tea cups with real food. Buy them from the thrift store so it won't matter if they accidentally get broken.

Who cares if it's messy, drag out the paints or the play dough and leave those dishes for later. Go dance in the rain on a summer day or run through the sprinklers with your kids. Just live each day to the fullest and make happy memories. Your kids won't remember the pile of clothes that needed to be folded or the dishes in the sink but they'll remember the tea parties and car races and dancing in the rain.

Let them drink soup from a straw because it doesn't matter how they eat, as long as they eat.

Let them spend the day playing super heros, running around the yard catching bad guys and saving the world.

Let them be pirates in search of burried treasure.

Read them that extra book at bedtime just because you want to hold them longer. Each day is a precious gift and we never know what tomorrow holds so live today like there's no tomorrow.

August 26 2011

5 years ago today, at 48 days old, we finally got to bring our baby home. What a sweet sweet day. 

First Liam had to pass the car seat test. He was to happy about being strapped in and not being held. He was so tiny we had to roll blankets and put them at his sides to make it safer. It was such a huge eye opener that our baby was so tiny. The clothes he's wearing were premie and way too big for him. After all he was born weighting 2 lbs 4 oz and I believe he was around 4-5 pounds here. 

We couldn't go out in the chilly SanFransico air without his beanie.

And then the BIG moment. The one when it all became real. They cut the bracelet and security tag off little lambs ankle. Seems redundant since it slipped off him daily but the whole "ceremony" of it was so uplifting and symbolic. 

Then finally Lanie's wish came true and she finally got to hold her baby brother. She held him like a pro, supporting his head without being told. She'd say "I know I know mom" and she called him her baby. He was hers and she wouldn't hear any different. 

Liam's Tia finally got to hold him for the first time that day. There were tears. Liam was just as happy to be in his Tia's arms. 

You can just see so much love here. Liam couldn't stop looking at his cousin chase. 

And then it was cousin Kaylas turn. Not only was this her first time holding "the bean" but it was the first time she got to see him. It was love at first sight. 

August 25 2011

September is NICU awareness month and I wanted to start things off a bit early by sharing how our NICU journey ended as they happened each day 5 years ago.

5 years ago today, I had my first sleep over with my little lamb. We had just received the news he was being discharged. We were all shocked and amazed, even the doctors. We had a list of training and things that had to be done before sweet little Liam would be released so we made quick work of a long list of do's. 

This particular night, was my favorite in all of our NICU journey. Why you ask? Because for the first time since Liam was born, he was all mine. My responsibility. We were put in a sleeping room, just the two of us. Nothing but the two of us to occupy each other. It was fully my job to change his diapers. My job to feed him every two hours and give him his meds. If he woke up crying, it was purely my job to soothe him. Finally things seemed right in the universe because this is how it was supposed to be. A mother taking care of her baby. 

I could hold him all night if I wanted to. There was no one who was going to get between my baby and me. My heart had broke for this. My soul had yearned for this. Finally, just finally I can't even tell you how happy I was sitting there in a room so quiet that it put a library to shame, with just my baby in my arms where he belonged.

I remember sitting there rocking him as I fed him, telling him that this was how it was supposed to be. Telling him he had no idea what he had missed out on and how I would make it up to him and never put him down. I remember the tears rolling down my face because I was just that happy. We were in our happy bubble and nothing was going to pop it. 

At least that's what I thought until the doctor walked in the room to discuss Liam's MRI results. Because Liam had been on ECMO, he was required to get an MRI before he was discharged. The results weren't what we were hoping and I'll never forget how crushed I felt. How my reality was yet again changed because of this tiny little boy. Liam's MRI showed a bright spot not he portion of his brain that controls cognitive thinking, problem solving and fine motor skills. They weren't sure if he'd ever have an imagination or what his future would hold. After dropping that bomb, the doctor left us. I remember holding Liam and looking into his face. His eye lifts tried to open but he was just so tired. I sat there, looking at this little boy who had fought so hard and I had our first serious talk. 

Sure I'd told him before that he needed to keep fighting but this was different. I looked at Liam and told him that I didn't care what the doctor said, that we would jump each hurdle as they came. We needed to worry about feeding and gaining weight first. I told Liam that the future was always going to be uncertain but together we would make it through anything. At that moment I decided I wasn't going to let my bubble burst, but I would modify it as needed. No matter what Liam's future held, I would be right there by his side to help him. 

And for 4 years, 5 months and 1 day, that's what I did. I stayed at my sons side. I cheered him on as he jumped (or sometimes stumbled) over each hurdle. I picked him up every time he fell and together we faced our toughest challenges. Liam proved to have an imagination at age 3. The first day he showed any imagination, I cried. He was sitting in the living room floor with his Hotwheels. He'd spent hours just sitting there arranging them. Then suddenly the cars started racing and here's Liam narrating the race followed by a wreck. With tears of joy I fell to my knees beside him and swooped him up in a hug. He had once again proven the doctors wrong and that God was bigger and greater. 

Walking up every morning.

Living a life I don't feel is mine. 

I'm here yet I'm so far away. 

I go through the day as if I was someone else in a dream.

I go to work. 

I come home and clean. 

I go to bed. 

My heart just isn't in it. 

I feel so dead inside. 

So empty.

It's been a rough 8 months. 

I can't even tell you how I got from then until now.

And I'm sure I won't be able to tell you how ingot from here until the 1 year mark.

Here we are in the midst of more first. 

I just watched as moms posted their kinders first day if school pictures.

I was proud that these CDHers made it. 

I was proud to see Liam's friends.

But I was sad for me.

For Liam. 

Now fall is on the horizon.

I normally would have started decorating for fall because I love the season. 

The orange leaves, pumpkins, boots and sweaters. 

Loved. 

I'm not sure I still do. 

The only fall item up is the garland I never got around to taking down last year. 

It's depressing. 

Halloween will be here before we know it.

Our first Halloween without Liam. 

Halloween was one of my favorite holidays. 

Now I don't even want to celebrate it. 

Team kids is starting back up and I'll miss his smiling face dancing on stage with Candace. 

I don't want to celebrate thanksgiving without seeing Liam's face covered in food. 

I don't want to spend another Christmas without my baby. 

Our first Christmas without a gift under the tree for him. 

Then there's the year mark. 

Right before Christmas. 

I don't even know how I'm going to get through it. 

I don't that day to ever come. 

I wasn't ready to let him go. 

I try so hard everyday to be strong. 

To just make it through the day. 

I wish I could be stronger. 

I wish I could make things better. 

This is all I have.