I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord
Psalm 27: 13-14

Wednesday, March 24, 2010

Emotionally spent today!

The foot castings done of both Zac and Evan's feet after they were born. It is something else to hold those tiny castings in the palm of my hand now!
Evan has officially mastered standing in his crib!!
Obviously he is QUITE proud of himself!
And he has become my yoga guru!! Downward dog pose all the way!!
Evan Bailey is no longer off limits!
Today Evan had his regular physio appointment. Just the usual. He goes, plays, I learn more technical stuff that no "normal" parent has to deal with when watching their child growing.
There are no concerns with Evan. He is right on track and doing amazing! I'm always so proud of each of his milestones, and another month with no issues. He is my rock star for sure!
But today at the place he goes (Kinsmen Childrens Center - the Alvin Buckwold Development Program), they had a huge clinic day. The KCC is to help children with physical and development problems, and the majority of patients (the children) do have some form of disability on varying degrees. Today I saw more children in wheelchairs with major physical/mental setbacks than I have ever seen.
I know I mentioned in a post long time ago that the day we said goodbye to Zac we were heading back to my room and the first thing we saw were parents working with their older son...stretching each muscle and massaging each muscle. Their son could not speak, could not properly independently move and would be forever confined to this wheelchair...short of a miracle.
None of us said a word (the people with me). None of us said what we learned we were all thinking after what we just went through with saying goodbye.
That if Zac had somehow miraculously been able to pull through all that was happening to him...he would never be a normal child. Never talk, walk, look at us with eyes more than those of the three day old son we knew. He would forever be confined to that wheelchair. Because of the extent of the devastation of his brain bleeds...there would have been no miracle of full recovery.
Today I was faced with that reality again. But you know what...I would have accepted it. I would have brought my son home and worked with him every day had he been able to survive. The selfish part of me would have held on to him for dear life. The selfLESS part of me knew I had no choice but to have to say "until eternity buddy".
Am I grateful knowing Zac did not have to lead this life here on earth the way it was expected of him had he survived? How can I say I'm GRATEFUL...because that would mean I am okay with the fact that I had to say goodbye. I don't know what word I would use?! I don't know how to describe the end result of saying goodbye.
Yes, I am grateful for Zac that he never had to suffer. But I'm not grateful that he ever HAD to suffer. I'm very UNgrateful for that. Still very angry that what happened happened.
But today I watched these selfless parents with their children...and my heart went out to them. They are making the best of every day, but I know it can't be easy. They are amazing. Their children are beyond precious.
When we first got to the waiting area to meet Evan's physiotherapist there was a girl in her wheelchair. I'm not sure her age, but she wasn't young. She can't speak, and her muscles and joints are very stiff. But she could sure smile! She saw Evan and this precious childlike excitement came over her face. She made these excited noises and moved to her form of waving. And Evan just smiled at her and started clapping.
From that point on, my heart melted, and ached all at once.
I can never be grateful enough for the blessings in Evan's life. For his health, his development, his will. He truly amazes me. We have been blessed with this awesome child who has overcome so many obstacles with so little set backs! I hate when doctors remind that things can "creep up" over the first few years. I don't need that fear placed in to my mind. I know my son. I know he is doing amazingly well. I don't believe setbacks are in his future. I believe he has such purpose for his life. I believe his life is an encouragement to other preemie parents that even though our story shows both sides to such an early birth...we are living stories of both extremes of outcomes. And although sad things happen...so do good. So do VERY good things.
As we left from Evan's appointment and I started to drive away...sobs just began overtaking me. Not pity sobs. Not selfish sobs (well, not totally selfish). Just painful sobs for another reminder of what Zac would have been faced, and for what Evan has been spared.
And even as I type this post the tears just will not stop falling.
I have no choice but to be grateful that Zac was spared...even for what that means. Don't get me wrong...I would have taken every moment with Zac too, regardless of the struggles. However, I am grateful that both of my sons are well. Just in different places.
I am grateful that Evan has been spared physical delays, mental delays. I am overjoyed by who he is becoming. And I pray for his protection for every day of his life!
His physio was really happy with Evan's progress and to hear that he is pulling himself up on things! Yup...Evan is forever standing up in his crib, and the couch. Today after we got home he crawled over to the couch, stood up, let go and stood there for a second and then plunked right on his tooshy! He was quite proud of himself.
So we are graduating to working on his standing strength, but not yet encouraging the finger-walking.
That's the thing with physio...I'm learning the textbook phases of what is desireable for a childs progress...but again I don't get to be just like any other normal parent just watching their child growing up.
Don't get me wrong, I don't feel hard towards that. I am MORE than happy to do WHATEVER Evan needs! And I know that this is for his well being to ensure he stays on the right track.
Some days I just wonder what "normal" feels like. But I do know that every day is a blessing with Evan in our lives.


  1. I love the casts of their feet...I wish I had thought of that...or someone else had for me. Who knew?

    I know what you mean about taking Zac in any condition, in any way. I feel the same about Matthew, and based on how much blood he lost, he would have suffered greatly. That's the selfish in me. I'm having a hard time letting that go...

    I love the Yoga pose!!! Go Evan!

  2. I appreciated your honest post. I haven't been where you are, but my heart goes out to you. You mentioned the word "normal" at the end of your post. It made me think of the book, "A New Kind of Normal"...It might be worth seeking out. It was an excellent read about finding a "new kind of normal" when life turns a way we don't expect or wish. The book is by Carol Kent. It was very encouraging to me in my infertility journey - although it isn't specifically about infertility.

  3. I can really relate to this - I was so ready to be that mom as well, devote my life to Jack and help him be the best he could be when ultimately even that was not an option for him, for us. It must be very difficult to see those other children, my heart goes out to you.

    I love the feet castings, I am just trying to decide what to do with Jack's and you have given me a great idea - thanks!



    PS. Your little guy is very cute, when my little guy started doing the downward dog yoga post the next step was walking!