This is a blog
about my little Jack.
Jack was born
on June 22, 2009.
We found out 5
days after he was
born that he has
a genetic disorder.
This blog is to update family and friends of what is going on with him and share any resources I come across about DS. Happy reading :)
Friday, November 12, 2010
Not Faking It
Ok, so I need to vent a little bit. This week has been a hard one. And risking all the negative comments that may come from this post – here I go.
It’s been just me and Jack for almost 3 months now. And to be honest, the last month has been pretty good. I have been enjoying time with Jack and friends and not having to worry about all the things I was worrying before M left. I use the letter “M” for you know who – cause just saying his name makes me want to vomit. Jack has made lots of progress – he is crawling, sitting up so well and trying to pull to stand. On top of that he is saying Momma occasionally and signing it and trying to eat with a spoon. But there is always that moment that comes when you are faced with reality. Down Syndrome.
Ask any of my friends or family and they will tell you that I adore Jack and wouldn’t change a thing about him, but sometimes it gets to me. And this week was one of those weeks. Jack’s OT was asking me questions like, “do you think when you ask him to give you the ball…that he gives you the ball because he knows it’s a ball or because it is just an object he prefers”. Well, I don’t know. I am excited when I say give me the ball that he gives me the ball – but do I know that he is really getting it. Nope. She made him say “bah” before she would give him the ball and my heart about broke into pieces. He kept sticking his little fingers in his mouth and look at me with those big blue eyes – like “Momma – help me” I could see in his sweet face that he wanted to say "Bah" but couldn't...he couldn't do it on command. I finally told her that any vocal sound should warrant him getting the ball. I guess I am just not ready to be that tough on my sweetie. And when she left - I just cried. I held him and cried. I wanted to take the delay and put it on myself. And I know this is just the tip of the ice berg. It will be bicycling and shoe -tying and writing and reading, etc over and over again in his life and it makes me so sad. I love our OT, she makes me think about things and reminds me to do so much, but sometimes it’s really hard because she points out things and asks me tough questions. Questions about Jack’s cognitive ability and after each session I get a little discouraged. Do I know that when I say milk, he understands what milk is without seeing it? Nope. Does he know what ‘night night’ or book mean? I have no clue. I see glimpses here and there that he is getting it, but I have no absolute knowledge.
And I know that every parent deals with this at some point, but let’s face it – when you have a child with delays – the process is much longer and much more painful. (disclaimer: I am an advocate for Down Syndrome and see the beauty in it, but I also will not hide the parts that are hard - they don't make me love Jack any less) And never mind that now I get to do it all on my own. No one to give me a break – or help teach Jack things. Just me. And the pressure is on. And this week I feel this huge burden that Jacks’ successes or failures in life rely solely on me. And I know if any of my fellow moms said something like that to me, I would tell them how crazy that notion is, but I can’t help it…it’s how I feel.
And so I am mad. I am mad that I have to navigate this single mom of a child with Down Syndrome alone. I am mad that I therapy is just me and dr. appts are just me. I am mad that there is no one around to give me a break or help me with different things. I am mad no one is around when I cry after therapy to give me a hug and tell me it will all be OK. I am mad that I am so exhausted that I have to remind myself to do ‘therapy play’ after working 40 hours a week and having 3 therapies a week – and not to mention the stress that comes with a divorce. I am mad that I am going through a divorce. I don’t want to be married to that person anymore – but I don’t want to be divorced or Jack to be without a dad. I am mad that Jack only has me. I am mad that I have to figure out a legal guardian in the event of something tragic. I am mad that our finances rely on me mainly. I am mad that I have to sell our home and think about moving without anyone’s help. I am mad that I go to bed in an empty room and no one asks me “how was your day?”. I am mad that I don’t know any other single moms really. I am mad that I feel like the black sheep of all my friends. I am mad that I have to eventually be “out there” again and learn the rules of dating and 'what not' eventually. I am mad that I will cook Thanksgiving for only me and Jack. I am mad that I don’t know what the future holds for me or for Jack.
I know – Enough of the pity party Brandi. And if I can say one thing – bull shit. I don’t have pity parties very often – so this one is mine for the month of November. I go to work everyday, come home do therapy, feed Jack and play and then read or watch TV or clean or something without missing a beat. It's been a while since I had a pity party. And I will say that I have INCREDIBLE friends and family – the best on earth. And they help as much as they can and they have practically held me through so much of this. But they can’t replace a broken heart or a lonely bed or a missing dad. And that’s hard. My respect for single parents has exponentially increased in the past months. It’s a very difficult life and I feel like there should be a day each year set aside for them. Cause it’s hard. It really is. And I love being a mom. It’s the thing I always wanted to be but it’s really really hard….and lonely. And even if it's hard or lonely - I wouldn't change it. I can't imagine my life without my sweet son and wouldn't want to. The balance is hard though - I find myself wanting to spend so much time with Jack to be sure he has what he needs, but also wanting to go out and be amongst adults…and the times I have gotten a babysitter and gone out – I had a blast – and then felt guilty. Like since I have a child at home, I shouldn’t be able to go out and have fun. Crazy. This balancing act is really hard and I know I will eventually get the hang of it, but for now I feel like a waitress with a huge round tray filled with empty plates, overflowing drinks and the gracefulness of a pit bull. I feel like I drop everything – nothing is without a crack or spill. And btw- I really love being married and being committed – I feel like I am really good at it, so I have no clue why on earth this has happened to me. I can’t help but asking, What did I do to deserve any of this? Why does this crap happen? Ugh. The long list of un-ending questions.
And little sweet Jack – he deserves the very best. He deserves all the love and wonder in the world. And I love him more than anything. I love his smile and cuddle. And he is learning how to be a real boy – he is getting an attitude. That’s right folks – this little sweet cutie pie is getting an attitude and learning to test limits. It’s crazy. It’s like a switch flipped or something and here is another instance when in a relationship you would ask for suggestions or discuss how to handle these things, but no – I get to make yet another decision alone.
I am really sorry for saying all of this – compared to so many I have so much to be grateful for. I have a wonderful, sweet son, amazing friends, loving and accepting family, a job, a home and food. I really have no room to complain. And I know how blessed I am. I count my blessings and try to remember to dance in the rain. And I have been dancing, but this week - the dance has turned into the awkward girl in Middle school standing on the side lines wanting to dance, but she ends up watching instead. That's me this week. I don't want to feel this way - but I do. So, I guess I just needed to get all of this off my chest. So there it is – it’s out there. I have always been a person who needs to say it like it is – I hate faking things – and I won’t fake how hard this is. Hug all those single parents you know and those of you who have amazing partners - don't take them for granted. And let's hope my dancing shoes come back soon.