Sunday, August 24, 2014

A Big Heart from Big Brother

From Good to Fighting

Marcus made a video for Maia. He thought about how to make it, what to say and asked us to film him. We value every second, minute, hour, day and month with Maia, and we have had 11 birthdays already, one for each month. She is finally turning 1 year old. We were planning a party before she went back into the hospital, with live bands, a magician, face painters, balloon guy, hula dancers, DJ, food and ice cream truck for 400 people plus, which included all of you on the Mighty Maia Fight Team. Please watch Marcus' video and send a birthday card for Maia... it means so much to him for her.

We had our family meeting yesterday the 22nd, like we do every Friday . As we all know Maia is a really sick baby and as we have said before, her doing good, okay, alright is not what you think. What we mean is that she is alive and breathing today, at that moment. In this week's meeting, "end of life" was the topic. The Dr's. think she will never come home, never be off of ventilator support and her end of life is coming. How long??? We do not know. But we were told before that she would never come home, that her odds of life were ZERO and she proved everyone wrong. After the scare 3 weeks ago we know it can happen any day at anytime. We're not giving up, we won't leave her side, we won't stop fighting, for and with Maia.

Through our adventure we have always planted little seeds in Marcus' mind. The "just in case" seeds. I said 3 weeks ago that Marcus knew coming into Maia's room that things were not right. People were not talking normally, the monitors did not read what they should be reading. Marcus is wise in many ways and I knew when he entered the room, within seconds he knew Maia was close to leaving us. He did not say anything nor did he show it to others, but I know my son and I know he knew that Maia was about to go to heaven.

We left the hospital today, Saturday the 23rd and went and ate lunch and I asked Marcus "you know Maia is really sick right?" He said "Yes I do dad." So later when we were driving I asked him "what kind of sick is Maia?" Marcus answered "she can die at anytime." I then changed the subject and talked about the milkshakes we had at lunch. I was somewhat in shock he knew this and that in his mind, through his tone of voice, he like us values each second with her. I worry about Marcus emotions as he is about to go into 1st grade. When he was 4 and in preschool we dropped him off as a boy learning and watching his mom go through pregnancy. He watched her body change, her tummy get big and he did all the things an older sibling would do, kissed her belly, talked to the baby inside. He would remind mom to take her Iron pills and make sure she did not eat shell fish as she is allergic. Then his sister Marissa was born and became an angel a week before school ended. Then everything he has gone through with Maia I worry. I love him so much. I worry about Rizza, as a woman caring 2 babies that have had such health issues and if Maia passes how she would take it. I love her to.

Recently I have been thinking about everyone, Marcus, Rizza, the staff at UCSF, all our Facebook, Instagram and blog followers, you.  I talked about it in the meeting as I am worried about everyone's feelings, emotions and faith. If Maia is to become an angel with Marissa, it will be hard on me. What I worry about is you, all of you. Don't lose your faith because if it does happen, this is what God has planned for us, again. All that we have prayed for, fought for, liked and commented on, is it helping? "HELL YES!!!" The kind words of inspiration, confidence, and the will to fight has all mattered. Again we're not giving up but we know that there has been no improvement in Maia's lungs. Her heart is doing good and no meds are needed. Although she still needs diuretics, her kidneys are okay. It's her lungs. Unless an act of God happens and her lungs heal better than before we came back to the hospital, her end of life is near. She cannot survive getting another cold, or any kind of sickness or infection. She cannot survive by continuously injecting meds into her to keep her stable. She cannot survive all that her body is going through. I offer any part of my body to God, even my life if it would help Maia heal. Maia has not been suffering but has been very irritated, upset, and just not comfortable lately. In the last month I cannot count the minutes on one hand that I have seen her eyes in any kind of happy. Maia has been happy to see us, happy we're there, happy to see her nurse family, happy to see all the visitors that have come by to see her, and again that has helped her be strong.

Thank you to those who already sent cards and for everyone that is sending cards. This means so much to Marcus.. So much to us and a lot to Maia.

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