Barely

I’m barely holding it together these days.

Reading all of the posts on Facebook, all of the texts, all of the messages, emails, comments…it’s uplifting and overwhelming to know that so many of you are praying for us.

So many of you have been kind and made comments about being brave, being strong…and me…in the same sentence.

Know – I’m none of those things.  There are days when I don’t think I can do this.  I curse it.  I do.  I wish beyond all measures for normalcy – and curse the fact that our lives will never be the same.  And then quickly ask forgiveness – because I know there is a purpose for all of this…it’s just hard to see most days.

I barely keep it together most days.  Everyday this week I’ve cried – not just a few tears here and there – but the ugly cry, huge sobs, that is quickly followed by a tall glass of water because I’ve drained my body of pretty much every ounce of fluid.  This week is just a bad week.  I have really good weeks where I’m super positive – just not this week.

We’re not only faced with the challenges of his heart, but also with the cleft lip and palate.  We will have to get further pictures to see the severity of it since every time they try and do a 4D sonogram, his hands have been in his face…just like Iz’s were when she was a baby.  They don’t think it’s minor – but a major deformity – so we may be faced with extra challenges with that. And with that challenge – I fear something more could be wrong with him.

There are days where I don’t know what to do with myself.  Iz, of course, is my constant stream of joy.  I hate when she sees me crying.  She is extremely sensitive to mine and Craig’s emotions.  Too many times to count – she’s crawled in my lap, taken her hands and wiped  my tears and said, “Mommy – be happy.”  And almost in an act of solidarity, Baby boy gives me a swift kick in the gut…reminding me to yes – be happy.

I kiss her perfect face and remind her over and over again that SHE makes me happy.  And my tears have nothing to do with her…it’s just a sad time for Daddy and I.

Since we found out about Baby’s condition in October, we’ve done all that we can to make sure we shower Iz with as much attention as possible.  There are nights where Craig or I will crawl into her twin bed and just lay with her – cherishing the silent moments, hearing her breathe, praising God for her strong heart, her healthy body…

We talk often about Baby Brother (she likes to call him “sister..”), about how he’s sick, and that we have to pray extra hard for him.  We are preparing her as much as we can, telling her that Baby Brother is sick, and Mommy and Daddy will have to be with him to get him better, but her Tatay, Nana, Lola, Abuelo, Abuela, and Tita’s – will all be ready to play and take care of her.  My heart aches – not just for the long road that awaits us for Baby Boy – but for the drastic changes Iz is about to experience.  She is truly my heart.  My girl.  She is Craig’s shadow when he’s home – his #1 fan.  But, she’s resilient – and as much as I cringe to think about – what we are about to go through with Baby – is just going to be her normal.

There are days when I wonder if what we tell her sinks in or if she is understanding any of it.  Because let’s face it – I’ll start to have a serious conversation with her about what’s happening – she’ll nod and say, “Ok” and then a second later talk about something Dora did.  Hmmm…

But one day, out of the blue, she looked at me and said, “Baby brudder is sick.  Let’s pray for him.”

I was shocked and we folded our hands together.  She closed her eyes super tight and simply said, “Thank you for Jesus.  Thank you for brudder.  And his heart.”

And that was it.  A perfect prayer.  And God knew exactly what she meant.

So, as I type and cry (again..seems like a pattern) – I think about Iz’s prayer.  I think about how God has blessed me beyond comprehension with the joy of my little girl, I think about Craig – his hands that have held mine through all of this, his unwavering faith – reminding me that God will give Baby what he needs to get through this..and if Baby doesn’t make it – God will give us what we need, the many, many blessings that I took for granted before this battle – a family network that is so close by willing to help in any way they can, friends that are constantly praying for me and excited to celebrate my strong boy, Craig’s job,  a home that is only 30 minutes away from the hospital where Baby will spend quite a bit of time at, cars to get us back and forth from the hospital….it’s the little things all wrapped up in the big things.

Today, I’ve decided no more tears – at least until tomorrow.  Baby just kicked and I think he agrees.  I’m going to rejoice in my today with him, my Iz, my Craig.  I’m going to focus on what I do have – this second – and stop obsessing about what lies ahead.  I’m going to get through this day with as much joy as God will provide.  I’ll get through the next few minutes, next few hours…barely.

 

1 Peter 1:8-9 Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith.

Comments

  1. Sweet girl, your post reminds me that ALL things work for good for those who love Him. You will get through this! My hubs & I are struggling with infertility and I will most likely never know the joy of holding my child in my arms – even for a moment. I’m not sure which is worse, but I think I would rather have the chance of loving a sick child than not having a child to love at all. You are in my prayers!

  2. Alice Clark says:

    Hi! My name is Alice Clark (NaNa) to my grandsons. I read your story when Natalie Cabeen forwarded it to me. Her husband Chad is my Godson. I love them a lot. My heart was touched by your story, and it made me think of something that might relieve some, only some, of your anxiety. I live with Major Depressive Disorder. Thank Goodness, treatment works, and I function pretty well most of the time. When I first got really sick with this mental illness, my daughter Taylor (TayTay) was 11 or 12 and my son Tyler was about 6. For a very long time, I couldn’t work or take care of my precious kids. They have different fathers, and although I still had custody, I asked my exes to please take care of my babies because I was not capable. I felt like I died, but I didn’t. I remember, specifically, praying to God to keep them safe in his hands. I asked him to look after them, because I couldn’t. He took great care of them and so did their dads. They are now 30 and 25 and living happy lives full of love. I still pray for God to keep them safe in his hands. A couple of years ago, I learned another part of asking God to keep them safe. I learned that once you put them in God’s hands, you must leave them there. Never try to take it back because you think you are now strong enough to handle it. It gives me great peace to know that they are always safe in his hands, and I don’t try to take God’s job back.
    The other thing I wondered when I found out about my mental illness was, “Why me.” It took a while, but I realized my MI was actually a gift from God. We don’t have to LIKE all the gifts we get! Because of my ‘gift’, I found my purpose in life. I am now an advocate for people living with disabilities of all types, but especially mental illness. God put all the challenges of my life in front of me so I could learn how to use them to help other people. I have served on a local, state and national level for the organization called NAMI (The National Alliance on Mental Illness), and I now serve on the PAIMI (Protection and Advocacy for Individuals with Mental Illness) Council for Disability Rights Texas. My family went through unbearable hardshios because of my illness, and my children suffered the most. However, they have learned so much about helping others and understanding people who are different. I’ve been able to share my talents for writing, public speaking and teaching to share my story with people in our country and other countries. It gives me back part of my self-esteem when I help others. You are already sharing your story with the world, and believe me, it will give other people hope and increase their understanding and compassion.
    The most important thing I wanted to say is I continue to pray every day for God to give me Strength and Courage to make it through until tomorrow. He always answers that prayer. I will pray for you and your family to receive the same Strength and Courage every day. Please put it in God’s hands and leave it there. He will answer your prayers in his time not our time. Keep me posted, and I won’t be able to keep from thinking about you guys every day. Alice Clark