As I was saying life is up and going again.
I keeping thinking back over the past months and man have times been hard. It is no lie. Things were hard, not impossible. I met a mom recently new to this parallel life I am living with my defiant special needs little girl. Wow. It makes me very humble. I do not ever want to forget what it was like being there with the new and unknown. Not to mention the feeling of where did the life I had planned go?
While you are in it, not that I am out of it yet, you don’t realize the wide range of emotions are normal. You have to do something with the emotions and hope that what you do turns into something positive. This blog is great and all, but I have not posted about the down days - when I was having a moment. It would be much to embarrassing, but those times are the reality also.
Now I think I am somewhere in the middle. Some days are great, some days okay, and some days down right stink.
For all the resources there are for Ivey, it is limited to resources for parents and what parent should do with themselves. As I said before, where do the parents fit in? Once Ivey was born, everything that I did on a normal day completely stopped, that includes my time with my husband, sons, friends, or for me. Sound selfish? Maybe. But I will challenge anyone to completely stop their lives for one week and live our routine and see where you stand. My parents love keeping the kiddos but I love it when we return and they start heading for the door. My point is - it takes time for life to begin again.
So here are the best three pieces of advice given to me:
1. If you feel like you are about to fall apart - don’t do it in front of your other children or take it out on your spouse (this can be hard to do at times). Get in you car and drive all the while screaming at the top of your lungs or crying your eyes out. We are all lucky that Matt’s head is still attached to his shoulders for all the times I have bitten it off.
2. Let others HELP! I still have a hard time with this one. Pride is an awful thing.
3. Get up each morning and do something normal, like shower and makeup. A friend came to visit during Ivey’s extended stay at Scottish Rite. She about died when I pulled out my heels to walk around the hospital. Sometimes you just have to take the sweat pants off no matter where you are.
By the way, I have taken all three to the pool by myself. It resembled something similar to the Bermuda Triangle and I was waiting for one to disappear never to be seen again. Nevertheless, we got up the next day and tried again.
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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You DID? Much to my eldest son's dismay, we are still sticking with our plastic pools...yes, we have 2 so there is plenty of room for everyone to splash in and get rowdy in. I'm proud of you for getting up and going again. :)
And I agree with your 3 points. The first year of therapies, we had some coming at 7:30 in the morning, so many days we were all still in our pjs. However, now that things are a little later, I do try to get dressed first, and people wonder how I have time. I have to make time, but it does make life feel much more normal. I have a very hard time with your 2nd point but am learning that more and more. And your 1st point, all I can say is how thankful I am for a Godly husband who still loves me. :)
You're an amazing example Gwen! I wish I could watch you in action! Far closer to grace than many of us, I am sure.
Gwen, I can see you being a huge blessing to many parents with special needs children. And I'm sure you have already been. May God continue to give you the strength and grace to do so!
Wow all three at the pool.... you are one brave woman. But I totally understand. Sometimes it's worth the craziness of it all to get out and do something:)
Gwen, I have been reading your blog for a long time. You are absoltely amazing how you have lived your life over the last year. You are the epitome of "fake it til you make it." I can't even begin to imagine what one day is like in your life, even on the good days. Your precious family is blessed to have a woman like you in their lives.
You have a great handle on things. It took me over a year to realise that I needed time too. I thought I had to give all myself to her and her needs. It took me time to see that I couldnt give my best self until I took care of myself too. It meant buying some glitter lipgloss because it made me feel like a girl, or going out with my husband and flirt rather than talk about diapers and therapy. Life goes on. I woke up one day and thought I wanted Emma, when she got older, never to look at me or our family and think 'life stopped for them because of me'. I wanted her to look at our family and see how it grew with her, because of her, and inspite of the trials that we faced.
Sometimes I look back on some of the times before I got that lesson and feel guilty for not savorying each moment rather than trying to push on to the next and the next. But thats another lesson; guilt does nothing other than give you a stomach ache. We live, learn and do the best with the knowledge we have at the time.
Thank you for reminding me of lessons learned and bravo to you for learning them early on!
Well, I would say I'm proud of all you have done... but I bet there is a part of you that says, "Don't say that".. for on some days, you feel less than proud... you are just coping, just barely making it..
I would say, "I understand" but I don't...I never will
I would say, "God never gives...la da. da..." but I bet some days you would like to have an all out discussion about that with Him..
So, all I will say is, I do admire you on your weak days and on your strong days.
I do pray for you and Ivey and all of your family.
And I would come at the drop of a hat to help out.
And thank you for sharing your story and being real.
sending love your way....
Gwen, it was so great talking with you at the birthday party last Saturday. Whether they're about good days or bad, your posts have really been a blessing to me as a mom, and I thank you for that. I also thank you for the inside info on that ridiculously good birthday cake! I'll be giving you a call in the fall to get the lady's number so she can make my kids' cakes in November!
Oh, Gwen, I'm in awe of you! I am WAY too scared to attempt it on my own, and I consider myself pretty brave! You are incredible :)
And I loved Advice #3--even if it's just tinted lip gloss, getting "dressed" can make all the difference in the world as a mom!
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