Sometimes it still doesn't feel real. I can't believe she's not here with us. No one ever expects to lose a child. It's the worst thing imaginable and comes with a pain that will never go away. Mia is my first child, and I remember all the excitement I felt prior to her birth. I remember thinking about all the wonderful things we'd get to do with her and all the love we'd get to show her.  There were so many plans for the future.

What hurts the most sometimes is all the things I wish she was here to experience with us.  I want to take her to the park with us, go for walks, see her play in a pool, cuddle with her and watch tv. There are so many moments in our lives that just don't feel complete without her here. I want to see her meet her new little sister when she's born. I know that Mia is always with us, but I wish I could see her reaction to so many things. And I know that she is having an amazing time in heaven, and that too, I wish I could get a glimpse of. I want to see her smile and laugh while she does something fun. I want to see her dance and run and jump and play. Those are things I don't get the joy of seeing here on earth. I know her life in heaven is infinitely better than it was here on earth, but I miss her. I miss holding her little hand, kissing her cheek, and seeing her face.  All the things I wish for are just the everyday things parents get to do with their children.

We do many things to cope and deal with not having her here anymore. Our Mia garden is nice tribute to her memory. It makes us feel good to have created something beautiful in her honor. Her memory is very much alive at our house through pictures and her belongings. We discuss happy memories that make us smile. I'm also working on a photo book of her life, so that I can share her memory with future siblings. I want them to know how incredible their sister was, even though they never get to meet her. Even the process of creating the book is therapeutic. I love remembering all the moments with Mia. We cherished every moment we had because we never knew how long she'd be here. In a way, that's how we should always live. When you live like that, you see the beauty in the smallest things and truly treasure them. 

I believe when you're in this situation that we're in, it could be so easy to think negatively and be depressed. But we have always appreciated all we had with Mia even though we wanted more. From the beginning, we knew we were blessed. We never felt sorry for ourselves. We had this beautiful, amazing little girl...why should anyone feel sorry for themselves about that? I think that mentality is what allows us to survive and get through this. Mia's time here was precious, beautiful, and meaningful. Part of our role as her parents is to continue spreading her message and helping those in similar positions. I know that's why God chose us. It's definitely hard not having her here, but I know I was truly lucky to be Mia's mother.

Tough Times

Today we had a meeting with all of Mia's doctors to discuss what's been going on. It was a difficult meeting. They said things we already knew they were thinking. They have concerns. They are worried that things might not get better. She is not getting better very fast, and it's hard to see much improvement at times. And she still has the feeding issue in addition to her current respiratory problem.

These past few weeks have been extremely difficult. There have been times I felt we might lose Mia. I wasn't sure if she was going to pull through. As hard as it for me to say this, I've went shopping and wondered if I should pick something out for her to be buried in. I don't say the thought out loud or mention it to Lee because it makes it even more real. I still have hope, but I also know there's a very real possibility God might decide to take Mia.

I pray for miracles everyday, but I also pray for God to let me know which direction take with Mia's care. As much as I want her here, I never want to keep her here for my own selfish reasons. I want her to be happy, and it scares me that could possibly mean we no longer have her here with us.

What I do know is that these past eight months have been the best times of my life. She has filled our lives with so much love and joy. She has taught us so much in her short little life. She has made me look at things differently and appreciate things. We celebrate the little things and cherish them. What she's done for us in these months, we will carry for a lifetime.

All we can do now is place everything in God's hands with the understanding that whatever happens, He will help us get through it.

Feeling Down...

Today I'm not feeling as strong as I usually do.  Not sure exactly what it is.  I think it's just one of those days when things hit you a little harder.  Even though I was going to be spending Thanksgiving apart from most of my family, I was happy to be with Mia.  I was happy that we would have each other today.  In the afternoon, I asked the nurse and respiratory therapist to help situate everything so I could hold her. I sat with her for three hours.  I looked at her beautiful little face and thanked God for blessing me with her.  Every day with Mia is a blessing.  

At some point, I started feeling sad.  I think it has to do with a combination of things.  I think I started feeling lonely when I saw everyone's Thanksgiving posts.  Of course I'm happy everyone was having a good day, but I think it just further reminded me that Mia was spending her first Thanksgiving in the hospital.  After holding Mia for a few hours, I was feeling hungry so I went to the cafeteria to get a Thanksgiving meal. I was actually looking forward to it.  When I went to get my meal, they were out of stuffing and green bean casserole.  As stupid as it sounds, that really upset me.  I think I really needed it to feel like Thanksgiving, and I felt let down. 

I just feel mad.  Mad that things aren't easier for Mia.  I so deeply know how it feels to have real fears of losing my daughter.  No one should have to feel that pain.  But this is reality in the PICU.  You are surrounded by people in the same situation. I've seen too many sad things.  Out there in the "real world", it's so easy to live in a bubble.  I'm sure I would be the same way if I wasn't in this situation.  So if you're one of the lucky ones blessed with healthy children, don't ever take that for granted.

Blessed

Some days I get sad when I see other babies living the life I thought Mia would be living. I get sad that she's been here in the hospital for months. I see my little nephew growing and thriving. My parents adore him. He gets to be surrounded by family every day, while Mia feels their love from afar. Our life consists of tubes, monitors, charting, assessments, nurses, doctors, medicine...

There are so many things other parents take for granted. When Mia cries on the vent, it's a silent cry. Her little face shows her cries, but no sound is heard. I want to pick her up and comfort her, but she has so many things attached to her, so picking her up isn't the easiest thing.  My only option is to pat her and try to soothe her, hoping that my nearness is enough. Dressing her in clothes is also not an easy task, so whenever we get the chance to dress her up, we are excited. Seems
like such a little thing to get excited about, but in this life, you learn that the simple things can bring such joy.

When I was pregnant with Mia, I fantasized about the person she would be. I pictured a little baby crawling around the house. I imagined her growing up into a happy little girl. It's easy to let these feelings overwhelm me at times. When I login to Facebook, I see so many friends with healthy babies doing the things I wish Mia could be doing. Jealousy and sadness come over me for a second, but then I am filled with peace. I'm extremely blessed by God. Mia is angel sent by Him. She is here to teach and inspire the world. He has performed many miracles through her, and I've been lucky enough to witness them firsthand. I am truly honored God picked me to be on this journey with Mia. Because of her, I've been able to meet so many other people I might not have ever come in touch with. She has touched the hearts of so many nurses, respiratory therapists, and doctors. She is teaching them about life.

Mia has enriched our lives in so many ways. She is an amazing picture of God's miracles. God has entrusted her with a big job here on earth, and I'm incredibly lucky to be apart of it.

Faith

People always tell Lee and me that we're strong. They can't understand how we're able to get through it.  I honestly think we're all stronger than we realize.  God gives you strength you don't even know you're capable of having.  If you would have told me I was going to be going through this, I wouldn't even be able to imagine dealing with it.  It's definitely hard and overwhelming at times, but my faith gets me through it.  God has blessed me with Mia because He knows that I will be strong enough.  He knows I will be able to handle whatever comes our way.  When we were waiting for the genetics results after Mia's birth, I remember praying and asking God for a miracle.  I remember asking Him to please let my Mia be a healthy, normal baby.  Looking back, I did get my miracle.  It might not have been the one I asked for, but it was definitely a miracle.  Mia is a miracle. This little baby is way tougher than me.  If she can get can keep fighting whatever issue comes her way, then I can do the same.  God has big plans for Mia.  It's so easy to already see that.  She is a source of inspiration for so many.  I know God will get us through it and soon we will be able to take her home. Please continue praying for our little Mia.