Jun 25, 2010

You really want to know? (a peek inside my head)

Most people ask me, "How are you REALLY doing?"  And I have a myriad of answers.  None of them completely truthful as I hold many competing thoughts in my head at all times.  So proceed with caution as you read this.  It's raw.  It's confusing. 

Every time Manny stops breathing, it feels like a little piece of me dies. 

When he sleeps peacefully, it wakes me up.  Why?  Because I have had this conversation with God - if You are going to take him, would you please take him peacefully in his sleep so he doesn't have to suffer?  And while that is what I want, many times every night I wake up and check to see if he is still with me. 

When he cries, I have to go immediately to him.  With a "regular" baby, I would teach him that he needs to wait sometimes.  But with Manny ... I never want him to have to wait for anything.  (That's not possible with 6 kids, but it's my heart to do it.) 

When one of my other kids needs me, I'm so torn.  I want to immediately help them because I don't want them to every be resentful of him, ever.  And they are great, but I don't want to take advantage of their kindness and understanding.

When Manny wants to play even though it's waaaay late and he should be sleeping (like last night at 10:30), I play.  I find myself not being able to say, "Go to sleep"  because ... what if. 

I find myself growing very tired of telling the same story over and over and over again.  Like today it was to hospice nurses.  And yes, they need to know the whole story.  Yes, they need to know where I am emotionally.  But every time I tell it, I feel I am re-opening a very raw wound. 

I have come to dislike the balancing act I watch people try to do for me (professionals mostly).  If I'm not "sad enough" they think I don't have a grip on reality and they say things to make me face reality.  If I show any emotion they try to "fix" me and put me back together.  I HATE both of those reactions. 

I am tired of people telling me how wonderful I am for doing this.  I don't feel wonderful.  I feel inadequate. 

OK ... enough confessions for now.  Baby is crying and I have more important things to do.   


  1. Prayers and Hugs being sent your way!

  2. Cannot imagine. Praying for you and loving your Manny!

  3. I am sorry you all have to go through all of this. Sending love and understanding.. When my son was diagnosed with cancer I was so devastated and didn't know how to feel or react. I have found by taking life moment by moment and appreciate the precious time you have with your loved ones and savory each precious second is truly a gift all in its own... Thank God my son is in remission however we have had so many scares.. Always know dear Beth you are such a sweet loving and precious mom to your children.. and to all of us... God bless you and your dear sweet family.. Prayers for little Manny... Hugs..

  4. Beth I can sympathize. Our daughter Alryn, was born with Cornelia DeLange Syndome and although healthy at the moment she is very tiny and has the CDLS features. I have to tell her story many times as well and answer the same questions. I also get the "your such a great person for adopting her" speech as well.

    Many questions about her mortality and the reality of her mental ability and her prognosis for the future. It gets old and if you seem ok for the moment people just think you're in denial and if you are sad then they do try to cheer you up.
    I know people mean well but it does get old.
    You are doing a fantastic job, I know it! I pray for Manny every day. He is such a special boy. Keep doing what your doing mama!

  5. Beth~ Thinking of you. I get the story part and the waiting...it is tough. I think all mom's are wonderful :) You are a mom and I have figured out that people just dont know what to say. Many moms would do what you are donig..that is what moms do...you are not inadaquate. You are on a journey...and it is tough. God Be with you and you family!!!!
    ~Kathy in Ak

  6. Your reflection today reminded me of what we went through when our daughter was struggling in the NICU. She fought bravely for 4 days before joining her twin sister in Heaven. The longest, most difficult 4 days of our lives. I cannot imagine what you are going through, but I have an appreciation. People have said and done really ignorant things during and after our loss. In their minds, they were being helpful (or nosy) but in reality, it only fueled our frustration/pain at a most difficult time. We are thinking of you and praying for your wonderful family. You have such beautiful faith in God and in Manny and, I pray, in yourself. I believe that you are positively touching the lives of many people through your blog and through your shining example of a mother's love. Thank you and God bless.

  7. Beth Im so sorry your little Mannys going through this. Like leeAnn, I have a son with CDLS. In the beginning and also now I tend to do the checking at night to make sure Nathan is ok even now after 14 years because he is so fragile. In the beginning it was very very scary. Nathan was in the NICU for 2 months. Then the doctors said just take him home and love him, and that it would be a rollercoaster ride and was he ever right. We were so scared. Sometimes I didnt know where I was going to get the strength to go on day after day. My son Nathan gave me that strength. I also have a little girl Jenna who also needs attention and that can be hard. you go to one child and you feel like your not giving the other enough. I try to involve Jenna in alot with Nathans care getting him dressed feedings or even helping to wash his face. when hes sick she covers him and sings to him..... When I read your blog I cried cause I understand. I will pray for Manny, you and the rest of your family. Your giving him the most important thing and thats love.. GOD BLESS