Meet the McNeil Family

Meet the McNeil Family

Thursday, September 22, 2011

Drowning

I have been quiet the past few weeks. We are still finding our rhythm with the school year. I am actually enjoying the change in having Oliver attend afternoon preschool. We have been able to spend more quality time together (the past 2 years he napped in the afternoon, after morning school). We have visited playgrounds, ran errands and just hung around at home. I like having those special adventures with him.

On Tuesday we met with our medical equipment rep. Waverly has already outgrown her pretty pink wheelchair and we need something else to better fit her needs. She is getting heavy and my back simply cannot handle lifting her up into her chair. I wanted something that she can back into herself. I also wanted a lighter chair. (Her current chair is over 40 lbs!) Her trunk is weakening, so we need some additional lateral support to keep her centered. We also need a sturdier vest to keep her back in her seat, instead of hunching forward. I think we found a good option that meets all of our needs. The rep also brought a sample wheelchair that we just ordered for Oliver. It is a very simple pediatric wheelchair (more like a large stroller). Oliver climbed right up and waited for a ride. As I stood there looking at both kids in their respective wheelchairs it took everything in me to not burst into tears. I am just now sure how I am going to manage both of them as the disease progresses.

Also on Tuesday, Waverly's teacher sent home some questionnaires. They wanted to know Wavey's favorites for a class project. Two questions gave me pause: 1) Waverly's best friend is_______ and 2) When I grow up I want to be _______. My poor sweet girl doesn't have a best friend. There are no sleep overs, no birthday party invitations, no secret notes, no phone calls for her. I ended up putting the name "Jessie" as her best friend - she is a little girl who also has Sanfilippo and I like to think of the girls as kindred spirits. I had no idea how to answer the second question. ***Because I know Wavey's teachers read this, I was not upset by the questions. It was just difficult for me.***

I have written about the undercurrent of sadness. It feels like the current is growing stronger as the kids get older. Sadness seems to wash over me more often. And I have a more difficult time catching my breath. I think the new school year, impending birthdays and the developmental assessment from MN have all left me reeling. I can quite get my footing and the waves of sorrow are crashing on me.

I read a recent post from another mother of 2 children, both with Sanfilippo. Her eldest child passed away earlier this year. She remarked that she was going through some items and came upon a toy that her daughter used to love to play with. She looked back and wished she would have taken the time to play with her daughter more with that toy. I keep replaying that sentiment in my mind. Slow down. Take the time to enjoy Waverly & Oliver in the moment. I have already seen those moments pass. Waverly no longer wants to have tea parties or feed her baby doll. I wish I would have taken advantage of that time and made more memories with her. I see Oliver struggle with puzzle he so easily completed a few months ago. He no longer wants to hold a crayon and put it to paper. Why didn't I spend more time doing those activities with him. Why didn't I build more trains or towers with the Duplos?

I am struggling.

10 comments:

Mike and Sarah said...

Saying a prayer for you, Shannon.

Sam Bennett said...

I think it's always important to remember to slow down and take it all in. It's something we all should do. But I also think you can't ever get enough of every moment- and it's an unfair burden we moms put on ourselves...whether we know how short time together is or not. You are doing a great job- an amazing job. Again, I don't know you, but your babies MUST know how much you love them if I can tell just from reading your blog.

And you will probably appreciate your time and the special moments with them far more than most...and THAT is a gift. :) It's the quality...

Cari said...

Made me cry. You could have put Dylan down too. I know he includes Waverly as one of his best friends! :)

Nick Brannick said...

This morning I was thinking to myself "when was the last time I just sat down with Liam and played trains or dinosaurs with him." Our lives have been consumed with our move, Erin's new job, my ... professional whatever this is (experiment, disaster, self-inflicted sabotage, not sure), plus trying to deal with our house back in Ohio that it seems like the kids are getting the short end of the stick, particularly during the week. I'm worried that they are growing up so fast and I'm missing 90% of that experience. I think all parents probably feel this way. I'm not sure what the answer is. Obviously until some rich unknown relative leaves us a pile of money, reality means that this situation will continue. So I guess maybe the way to cope, for me, is to focus on the memories and special times we are able to carve out with the kids and not dwell on all of the lost time and moments. When I find myself dwelling on what's lost I try to remind myself that this ruminating is lessening the joy of the limited time that is available for the kids. But it's hard, that's for sure.

Anonymous said...

I can not imagine where you are, it only makes me treasure my babies more, I never thought of death as much as I do since i had babies and I can only imagine your thoughts. There are no words to comfort you since I don't know truly how you feel only know that I have been feeling with you all this time you have blogged.

Anonymous said...

Everyone lives with the should have, could have, wish I had moments but that is a defeating thought. You need to assess what wonderful things you have accomplished with your children, how lucky they are to have such wonderful and caring parents. Only God knows what they can comprehend but at the end of the day they smile when they see you, if they could express it they would say thank you. Not one person reading this blog can ever understand how you manage and each one of us realize if we were in your shoes we would be struggling too. I appreciate the fact that you have used this as an outlet to express your feelings and as the days roll by you will continue to need a place to validate your feelings. I am praying for you that God will grant you strength for the tough times, grace for the hard times, and peace for the times of uncertainty.

God only gives challenges to those who can meet the objectives and reach the goal.

You are special and not alone.

Pamela said...

Shannon,
My hurt hearts for you. In reading your blog, I think you have done an excellent job of slowing down and enjoying your time with Wavey and Oliver. Will there always be more you could have done? Yes. But you're human and while you're as close to super woman as one can get, you still can't be super woman. If you can, try to go easy on yourself. You deal with an immense amount of stress day in and day out and are doing the best you can (and you are doing a great job). Take a little bit of that patience and love and understand you have for your children and use it for yourself. Keep up the great work.

Valerie said...

I am so sorry for your sadness!Please know you are in my heart as you go thru this tough phase. Waverly and Oliver are so fortunate to have a great mom like you that is so plugged in! And you are fortunate to have those two, they bless you more than you will know! luv you guys!

heidi said...

As usual, I don't have proper words. Just want you to know that I'm thinking of you all.

I am so grateful that you share your story here. Thank you for doing it.

Anonymous said...

I am praying for you.