I don't know if it's because Lillian turned 7 months last week, or if I've just been reading too many PWS emails/newsletters or if it's because we've doubled Lillian's therapy sessions, or had her EI evaluation and started talking about the future... but I'm in a funk.
Sunday during church I fed Lillian and listened to the sermon. As soon as the minister was done I got up and walked out because I just couldn't sit there anymore and keep it together. Wandering the hallways I tried to re-group, went to the restroom to wash out Lillian's bottle and tube, and decided to just keep walking the hallways. I don't like crying, and I certainly don't like losing it in public. Right about the time I pull it together I hear someone yelling my name, look up and see a good friend of mine on the second floor waving me to come say hello. So I head up there and of course the first thing he asks is... "How are you doing?" If only he knew how loaded that question was... he probably wouldn't have asked. I lost it. Thank God he's one of my best life long friends and a great listener. And thank God he didn't say something stupid and cliche like "It'll get better." He just listened. I needed that.
So let me explain the funk, and then we'll move on to the happier things in life once I get this off my chest.
The funk started with her aging. She's 7 months now. Obviously this is inevitable and ridiculous for me to get upset about, but the older she gets the closer we get to the "unknown" about PWS. At this age I know what to expect. I expect her to be lower tone than kids her age, not as hungry, easy to put down to sleep, adorable, sweet, happy, all smiles, proud of herself for her milestones, still in diapers, coos and babbles, ya know - the baby stuff. We have no idea what to expect as she gets older. And all you hear about are the horror stories. Google it if you want to know what they are. I'm not going to repeat them here.
No matter what the future holds she'll be my Lil' Bitty and I'll love her to pieces and will be proud of EVERY SINGLE accomplishment that she ever reaches. I hate myself for crying about her future. It hasn't been written and I try my hardest not to write it for her. It's hers... and damn it we ARE going to enjoy her life's journey.
But, there are days when I'm just a little bit broken. I fight back tears when other people are around. And when it's too much to hold back and I lose it (like in church the other day), hearing myself explain why I'm upset just makes me feel silly. I mean, honestly I've been given the most incredible little girl and here I am crying about things that haven't even been determined. Fear. She deserves so much more credit than that.
So we find joy in this life. We go on playdates to the Children's Museum and walk through the Barbie exhibit and create our own Barbie wardrobe out of scrap fabric and hair ties.
We get lunch with Grandma and purchase the cutest little sandles for our upcoming trip to the beach.
We swing at the park, do silly things with our hair after a bath, and snuggle up close with daddy for a much needed late afternoon nap.
And we cherish these moments before they slip away and become the past.
If I had a crystal ball and could look into our future and have it look anything like the present I would stop crying, pull my crap together, and leave the future where it belongs. But since there's no magic crystal ball we'll continue to take things one day at a time. And squeeze every bit of joy out of this life. Even on the bad days.
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ok Im in tears. The love you have for your daughter is just so huge and amazing! I don't think there is one person who can disagree that Lillian is so blessed to have been given you as a mother as you are blessed to have her. I won't say things will get better or keep your chin up because you already know that its going to be a tough road. However, How you choose to embrace it, is just nothing short of amazing. You are one remarkable woman, mother, wife and friend.
ReplyDeleteSarah,
ReplyDeleteI've read your blog since you were pregnant but have never commented. I wish I could give you a big hug! Your daughter is beautiful and you are a wonderful mother. Like the previous poster said, Lillian is absolutely blessed to have you as her Mom!
Sorry you have to go through this - its crazy isn't it? I swear I get a funk anytime I read the Gathered View - I guess in my head I really think the future for our little ones is a lot different than the kids born prior to say 2004. I read that stupid newsletter and get all freaked out. I just have to keep thinking: The advances in medicine have been amazing in the last 20 years - in the next 20 years (when we'll actually have to think about whether our kids will live independently, go to college, etc) who knows what it will be like! Heck 20 years ago we didn't even have the internet. God help those poor PWS parents. :) Lillian is beautiful & doing so well!!!
ReplyDelete" 'For I know the plans I have for you, declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.' "
ReplyDeleteJeremiah 29:11
This is my favorite verse. I wanted to share it with you. Your daughter is absolutely precious and I ditto what the other ladies have said. She is SO INCREDIBLY lucky to have a mother like you. You are strong and it's totally okay not to have it together all the time. It's expected.
Thinking about you. :)
I don't think I could say anything to make you feel better, but I do know that you inspire me to be a better mother. :)
ReplyDeleteSarah, no one expects you to be perfect throughout this journey. Please know that you are not just an inspiration to me but many, many others. I am lucky to know you and I hope that you feel my many hugs, laughs, and tears right along side with yours. Love ya girl and I am always around. <3
ReplyDeleteSare you are such a strong woman and an amazing mother! It is okay to cry, okay to worry and okay to fear. I'm sure with all the love and support you give, she is going to grow to be an amazing woman just like her mom! You have faced so many struggles yet you hold your head high and think positive. You have always inspired me and I wish you all the best now and in the future. Ok I have to stop now before the tears start flowing.
ReplyDeleteSare, your words that you think show your weak spots give me strength. I know what it feels like to have an unknown and unexpected future for your child, and for people to say it will get better. And for everyone to want you to reassure them that everything is really okay, when it's nothing but okay inside. Even with your burden of fear, you are an amazing mother to that amazing child. And it's totally okay to cry, even if you only allow yourself to 'lose it' in private.
ReplyDeleteYou and an incredible woman. I know this journey was not what you imagined for yourself or your husband. You have handled everything with such grace and poise that even your weakest moments are an inspiration to the rest of us. Lillian is so lucky to have such an inspirational woman as her mommy.
ReplyDeleteI'm so sorry you feel so sad. Just never forget how wonderful of a woman and a mother you are. YOu are such and inspiration for many of us.
ReplyDeleteI'm sorry. I have nothing else to say but that.
ReplyDeleteIf you check your statcounter you'll probably find me stalking you. Tonight you were on my mind; started looking for PWS blogs and then found yours. Thought, "That baby looks a lot like Lillian." :) I read every post from when late pregnancy through now. Loved it all. Praying for you again tonight; that you will constantly be reminded that you are the exact mommy God wanted for Lillian and that He will equip you for everything ahead. Much love!
ReplyDelete