Saturday, August 11, 2012

Feeling extra sad today

How can this be my life?
When asked by the priest on our wedding day "Will you raise your children up in the catholic faith?" I replied "lots of them" rather than a simple "we will". Everyone laughed, but I meant it, I've always said I wanted to have 5 children!
I'm the girl who adored playing "house" and "mommy" with her dolls growing up.
I'm the girl that thought about baby names years before becoming pregnant.
I went into teaching because I love children but also because I remember how awesome it was to grow up having my mom around during the summer and wanted to have those precious warm weather months to devote to my own children too.
How can this be happening?
So much has changed in a year. Last August our lives were perfect, we were living a dream. We had a beautiful son and had just found out I was pregnant with our second. We talked about getting bigger cars, finishing the basement and making it a playroom, turning our office into a second nursery, me taking time off to raise the children. This may sound cheesy, but Chris and I would randomly stop each other while walking around the house, give each other a kiss and say "I'm so happy" or "I love our life." Really. I feel like it was just yesterday. Life was simply wonderful.
What a difference a year makes. We wake up now and take care of our child, not knowing how long we'll have him with us. We can't stop his disease, there is no "miracle". We smile and laugh with him, but our days are filled with deep sadness, with measuring tube feeds, measuring medicine, consoling Oliver when his MLD causes him unprovocated irritability, managing his chronic pain, watching him lose every physical ability he has ever had, watching his cognitive skills decline, watching as he loses his ability to see and hear. It's painful, just existing through this each day, and today I don't feel very strong.


  1. Thinking of you Katie! You are an amazing Mom..I am happy to have met you, but sad for the circumstance.

  2. I think of you two often...especially when my 7 yr old comes into my office today and says "when can I meet Ollie". I tell her soon. But is the answer of "soon" enough. Today is my first day reading the blog I admit. Not really being able to bring myself to read it since my lil boy reminds me so much of Ollie. "Make each Moment Count"...Im trying...Knowing that is what all you and Chris know. You are such amazing parents and Ollie knows that!

  3. Oh Katie, reading this post, much like the "Toys" post, made me cry. I remember when the priest asked, "Do you accept children lovingly from God?" Chris answered "yes." You answered "yes...lots of them!" Everyone in the church laughed. It's hard to believe so much has changed in four short years. I don't think we'll ever fully understand why this is happening...

  4. I know that we will never understand the pain you and Chris are enduring, but please know that you are not going through this alone. There are so many people, including our family, who are surrounding you and your family with love, thinking of you and praying for Ollie every day. Your posts continue to remind me to make each moment count... Thank you for sharing your life...

  5. This makes me sad also... Seeing this little boy and his parents a few weeks ago with a friend bringing something to them and hoping it brought them some joy. I pray for you all every day and night. I know posting things here in the blog for every one 2 read is hard for you both. But it may help in the long run at least I hope it does. We love you so much,Allie

  6. Katie...I wish I had an answer for you. So much sorrow in such a short amount of time. Though it is hard to find the meaning behind it, sometimes there is a glimmer, even though we might not see it. Losing Miles must have been so hard, especially since Ollie's tragic diagnosis happened so soon afterwards. But I think Miles was sent to you to help you shed light on Ollie's disease before you might have thought about it. With Miles passing I think it gave you more time with Ollie. This must be so hard coping with such a rare disease. Imagine doing all that you are doing with an infant in tow. I believe what I told you before, that when the time is right that same angel will be sent back to you. You just never now when or in what form. I know that odds are stacked against you for children, but never think for a moment that there will not be more in your future if you choose it. It takes a lot of strength to see the good in the overwhelming sadness that is surrounding you, but as long as you can relish in those good and happy moments; you will get through this. You will gain a perspective on life that no one but you and Chris will ever know. You will never take for granted a smile, a kiss blown your way, the freedom of going for a run. You will know what making each moment count really means. God, I know it doesn't make it hurt any less, and it doesn't make sense out of something that simply has no rhyme or reason. Just don't give up on the fact that all is lost. It's hard to see a future when the present is blinded by pain and grief. But it is there. You will make it through this and the future guided by the gifts that Ollie gives you. In the meantime, I'll be blowing kisses your way. (Lesson taught to me by Ollie) :)