Structure

We are beginning to settle into a schedule and it is wonderful.  We all work better when we have structure and can anticipate what is coming next.  Waverly rode the bus to and from school today.  I think she enjoys it.  She loves being in a car and the other kids entertain her.  Oliver and I are able to run errands, go to the park, or have some therapy play together without distraction.  It is nice to have that one-on-one time with him.

I had a consult meeting with our pediatrician tonight.  She is wonderful!!  We were able to sit together and go over the past 16 months.  She is now up to date and willing to do what ever she needs to do in order to help us through this.  I feel so fortunate to have wonderful medical care and people invested in taking care of my kids.  This is why we returned to the US and tonight validated that decision for us once again.

It seems that every time one area of my life feels secure other areas become more chaotic.  That is proving to be the case once again.  The past week has been incredible difficult for me, personally.

I have been so encouraged by those of you who read this blog.  It has become therapy for me to sit down and write to all of you.  Thank you for being so interested in Waverly & Oliver.  I wish that I could return to our anonymous way of life, with 2 happy & healthy kids.  But since this is the path our lives have taken, I am glad that so many of you have fallen in love with my beautiful children.  I think their impact in your lives helps to soften the blow of this terrible disease.

Comments

Carolyn said…
I am from Ohio and have been following your journey and thinking what if that had been me or what if this situation was my grandchildren. I can't even imagine the thoughts you have the deep sorrow you feel or the moments of desperation. But I do know one thing your willingness to share and lay it all out is helping someone you may never know go through something similar. By sharing you are helping the next family that is faced with the same diagnosis. I admire you and your husband, you are real, honest, loving parents and you are being challenged with something that most us will never face. By sharing and letting us have just a little peek into your life you encourage me to be thankful for the family that I have been blessed with, not to moan and groan about the mess the grandkids leave but grab every God given moment to hug them love them and thank God for those precious moments. I don't know the why's but I do know that you are turning something bad into good by your giving spirit. I hope you can feel the love and prayers from the many people you feel as if you are part of our family. Please be encouraged and for a stranger from Ohio just know you have been hugged.

Carolyn Jones
chelsea said…
thank you for letting us in. i pray for you and your family often.

i am also a stranger but feel uniquely gripped by your story. i will continue to pray for you daily.
Christine said…
Amen to the comments on structure. I need it, they need it. As much as it can make me feel robotic at times, I get so much more accomplished, and feel like a much better mommy, when I stick to our written plan (we homeschool and have one ADHD son. He especially needs the predictability).

I can't begin to understand the weight of your situation - knowing that unless a cure comes soon, you will have to say an early and tragic goodbye to your lovely babies. My heart just aches so much about it. Your strength and grace and loveliness are miracles.

I will continue to pray for a cure, and for your peace. I'm so sorry it has been tough this week.

That doctor is a godsend!
girl its true! i read what you write every day! and i love the updates! thank YOU for sharing with us.

ali in texarkana, tx
E said…
I can't tell you how many times I think of and pray for you and your family. Your story daily reminds me how precious and fragile life is. Thank you for your willingness to be transparent.I'm so thankful that you take some solace in being able to blog and read comments.
Unknown said…
Matt and Shannon- Your kids are amazing... love all the new pictures. We're still praying... glad the routine is set, that the therapist is great, and that you feel a peace about being back in the US. Happy late anniversary, by the way! -Ann

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