Tue 14 Aug 2007
The Long Haul
Posted by Jane under Updates
[10] Comments
Andy was away for 4 days touring with Mucca Pazza, a circus punk marching band he plays with (this is a photo of one of their New York gigs!). I was expecting to be exhausted by his absence but arranged for so much help while he was away that I ended up getting more sleep than I’ve had in months and re-organizing the pantry. Go figure. Andy did not fare quite so well. He slept in a sleeping bag and stayed up till the wee hours each night. But he had a great time and I’m so pleased that he was able to get away for a few days to do something he loves.
I’ve felt rather stupified these past weeks about my ongoing feelings of loss and grief regarding Ramona. What’s also been occupying my thoughts is my own attitude towards her “condition”. Do I just treat her like any other baby? On the other hand, is special treatment really in her best interest? Part of me worries that being so careful with her and making so many allowances for her might interfere with her ability to reach her own potential.
I know that all parents eventually have to face that their children will have issues and challenges in their life. Am I the only one who on some level fantasized that our children would be trouble-free adults who have inherited only our best qualities? I’m just having a hard time facing that, at the ripe old age of 8 months, Ramona has a lot of known difficulties ahead of her. I wish I could sit around and fantasize about her becoming a painter, a runner, or a musician. But mostly I wonder, “Will she be able to walk? Will she be able to eat on her own? Will she be able to speak?”.
I feel like the window of time where it was okay to fall to pieces over this has closed. That now that the eminent threat to her life has passed for now I should be able to get a grip. But some days I’m still just in a state of disbelief that this isn’t all just going to go away. It’s overwhelming and devastating. Any thoughts on living in the moment without fear, holding onto hope without being naive or trusting in God’s provision would be very welcome right now.
Here are some things that I am thankful for today. Ramona’s eating three small meals by mouth a day. She last weighed 19lbs 7oz. She’s becoming more comfortable with bearing weight on her legs. She’s become much more vocal and responsive to things she enjoys (i.e. pulling Simon’s hair, looking at pictures of animals, and playing peek-a-boo). She’s getting a ton of hair on top which we think might be going blond.
Thanks for thinking of and praying for us so vigilantly. It still means so much.
Jane.
Photo by: Eric Harvey Brown
A “BLONDE” Ramona Mae!?!…Spectacular!
Three meals a day by mouth!?!…Incredible!
Bearing her weight!?!…Fantastic!
Pulling Simon’s hair!?!…Getting Even!
Gaining weight and BPA’s visible on the echo’..Miracles!
I am thankful for all the news, and can’t wait to see my BLONDE Sweat Pea.
Hi Jane. I understand your feelings and I wish I could help you feel better, but unfortunately, I think this may stay with us (me too) for a very long time.
Micah has just turned one year old and I still feel the same way as you do about him…as I signed my older son up for T-ball, I worried in my mind how I will tell Micah that he will not be playing competive sports. I worry that he will not be able to do so many things that his brother and sister will be able to do and I often find it incredibly unfair. I agree that no mother should have to look at her 8-month old daughter and wonder if she will ever be able to do “normal” things. It is not fair, but sadly, it is our reality.
I do not think that the “window” that you are talking about will ever close. I think that we, as mothers will always have that fear in our mind, and there will always be moments in time that we fall apart about something–this goes for a healthy child as well as our special children.
I think that you have an amazing strength about you and a love for those children that guides you through your life. And that is such an amazing trait to hold.
The only thing that I have found helps to ground me when I feel like you do is just taking a good long look at my beautiful children and reminding myself that every little thing about them is special and unique and that I have been given such a special gift. You have been given such gifts in Ramona and Simon, keep looking at all the positives of your life.
Thank you for sharing your life and your struggles with me.
Take care,
Samantha
Hi Jane,
What you wrote about your feelings of loss and grief are all too familiar to me. I think its important to remember that grief is a process, and it can be a long one. With the passage of time it gets a little easier, but it never completely goes away. Maybe the interval between break-downs gets longer, maybe we find ways to put it on the back burner, but it is still there. And while I do think it is important to be thankful for what we have and focus on the positive things in life, it’s also healthy to allow yourself to have the negative feelings too. You CAN be happy that Ramona is here and doing well AND be sad that her future is uncertain.
Here are some verses I turn to when I feel overwhelmed with stuff:
Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go. Joshua 1:9
I know the Lord is always with me. I will not be shaken for He is right beside me. Psalm 16:8
And for good measure, a very inspirational story about a 15-year old heart patient who didn’t let her CHD stand in the way of her dreams can be found at this address:
http://www.usatoday.com/sports/golf/2007-05-08-kline-cover_N.htm?csp=34
Sending love and prayers,
Andrea
Dear Jane
You know, the first thing that comes to me is that becoming a mother sort of initiates this cycle of fear in us all. We stop thinking only about how WE are going to turn out and start realising that we have undertaken a seriously difficult task and that maybe on SOME level we’d like to leave this to an expert someplace.
I say to Dave ALL the time before we fall asleep at night, “Just tell me you think they’ll turn out alright….I’m not screwing them up too badly, right?” So it feels like your developement as a parent is right on course…welcome!
What I think you want is the same thing that we all want. When Miles found a black widow spider near his sandbox I thanked God that I was standing there and grabbed his hand from enclosing it in his fist. When Chet fell out of the top bunk at 2 yrs old and looked at me with crossed eyes for a minute I thought for sure he had a brain injury…the list goes on and on.
My thought is this…all kids come with challenges built in and really fuzzy warranties. We don’t get to know what is going to happen, none of us get to know that.
What we do get is Hope…and moments to thank God for everything we have…and everyone we have. The only way I can think to stave off fear is to give thanks and live for that one moment. Sometimes it works, sometimes it doesn’t…I thank God for you and for your beautiful heart. Your children are indeed blessed to have you for their mother, don’t ever forget how much you are loved!
ang
Dear Jane:
Hello, I hope that this note finds you well.
I feel privileged to read your wonderful family updates today and to know that you got some much needed R&R. Will continue to pray for many more little blessings to come your way.
Two things:
First, I’m not a Mom, but I have a one-year old neice (niece?) who is also my first godchild. Since I met her I’ve always thought of how I could be a presence in her life. I felt limited by the fact that I can’t give her everything I would like to because 1) she is not my child and 2) am I really qualified to give her stuff like character, morals, or principles (I’m not a saint)? There are even moments when I’m grateful that I’m not her Mom because there are 10,563 things I’d like to do (go shopping, indulge in the parlor, have coffee or watch a movie with friends) on top of the things I kinda have to do (work, pay bills, have the car washed), other than spend time with her. Last Monday morning though I was On Leave from the office and her Mom dropped her off at our home on her way to work (Our Aunt who lives at home takes care of her when we’re all in our respective offices). I’ve hardly been home since July and most of this month has been filled with late nights at the office (new management) or with my church community (we sponsored a retreat over the weekend) so the last time we hung out was a while back. I was getting ready to leave for work when she arrived so our interaction was more of having her sit on my bed and tinker with whatever was there while I organized my life. Those few minutes together moved me because you could feel the love in the room so I think now that she is capable of anything because she knows she is loved by people in her life like me. I’d like to believe that your children would be fine wherever they are later on as long as they grow up ‘feeling’ the love from you and the rest of the family.
Second:
A priest once told me that “Your breaking point could be a prelude to your strongest moment.”
Wishing you a good midweek, keep smiling and God bless! Pardon any typos, too!
We never stop praying for you.
From the outside looking in it seems that you have a pretty good grip on things, Jane. Don’t be too hard on yourself. You’re a great mom and you’re doing a great job handling it all.
Dear Ones,
I love reading this blog! I love hearing about your successes & your struggles &, of course, about the babies:) I am personally enriched by the observations you make & by those of your respondents.
Dr. Seuss wrote a book entitled OH! THE PLACES YOU’LL GO. Now that my babies are grown, I realize that each one of them took me to “places” I probably would not have gone, except for who they are. At the time, of course, I didn’t always appreciate the value of all that parenting required of me- the wondering, the worry, the prayers, the joy – but, in hindsight, the memories are precious, precious links to who they are & who I am.
I like what Ang said about staving off fear by giving thanks. I need to do it always.
I love you & your dear babies, & I know you are endowed with all that is needed to care for & enjoy one another.
Sweetie! We are back! It is so good to read your words. I am so grateful for the good news and just wanting to give you a hug as you wrestle with the the uncertainties you face as a mom.
I think the other sisters have said it well above. I will add my “yay” to theirs as we affirm you as not only an capable mom, but an exceptional one. There is no window for “falling to pieces” – at least not one that’s shutting any time soon. I, for one, am with you for the long haul. I am blessed to know you and share your story.
I think most moms fall to pieces pretty regularly if they are perfectly honest about it. You’d laugh out loud if you knew my most recent one. Mothers share an odd sisterhood. For the sake of infertile friends, I don’t like to admit that this is true, but it is. I love you, sister!
Wow. I just stumbled onto your website. I am running the Chicago marathon this year in honor of my nephew, Clark. He too was born with Tetrology of Fallot two years ago. He had a very successful heart surgery (at Children’s Memorial) and is doing well. (I do realize that his heart was not in need of as much repair as Ramona’s and am in no way trying to compare the two!)I am so touched by this website and by the friends and family that have surrounded you with love and support (and meals and groceries). I know that my sister and brother in law would have been lost without their close community of friends and fellow beleivers. I am deciding right now to become a prayer warrior for your little Ramona. I will pray that God will heal her heart and that He would continue to show you guys a peace that surpasses all understanding. I will also pray that God will give Ramona’s cardiologists wisdom about how to treat and care for her. May God bless your family!
Nikki
Hi. Just wanted to tell you I’m still checking on you guys and praying all of the time.