Sometimes this life just sucks. Not all the time but sometimes. I'm not drowning in sorrow or anything but really there are things that happen when you are a mother to a special needs little lady that just suck. Most of them you just get used to. You accept them and move along. You come up with ways around the really sucky parts. But sometimes you forget and you try to hit the sucky parts head on...Like 10 years of experience in this sucky life will somehow make the sucky less sucky. But it doesn't work all the time. It is just SUCKY.
For example ~ Thanksgiving was SUCKY.
First of all, any big event with Hailey is difficult. She doesn't like crowds. She has a hard time regulating her behavior. She tends to obsess over one person in the group when she is nervous (normally her Poppa). The loud noises bother her. And the kicker is that when she is nervous, she lashes out at other children and tends to pull their hair (my apologies to the little girl who got the brunt of Hailey's hair pulling this year :-( ...which is fine if it is our close knit family but throw some other kids in the mix who don't know Hailey very well and it is a pretty ugly situation. We avoid a lot of these situations but we can't avoid them all. This year there were about 15 people who didn't know Hailey very well. SUCKY.
Then lets throw in the new subject of her g tube and her pump and eating every few hours for 45 minutes and how she is not quite used to the fact that she can't actually eat by mouth. We tried to make it as easy as we could for her. I adjusted her feeding schedule to be the same time that dinner was served so that we would all be sitting down and her pump and tube wouldn't be a big issue (she is still a little embarrassed about it). My mom sewed a part into her dress so that her tubie could go through it and it wouldn't be very noticeable. But the inevitable happened...which happens at everyone's Thanksgiving dinner (to my sister - don't be upset, this wasn't your fault and it does really happen at everyone's house on thanksgiving)...dinner was late and I couldn't wait any longer to feed her...so I tried to get her to sit down at the table and I was going to sit with her...but that didn't work. She wanted to be up. So I tried the backpack while she was walking around but it got clogged and pumped a little air! AHHHHH So I took her to the car so that I could finish the feeding while she was calm but that just made her panic more! And by the time I was in the car, I was crying which wasn't helping...Everyone was trying to help which sometimes just makes it worse all together. SUCKY.
The fact is that there are things that I should not try to do. I think that a big Thanksgiving dinner, while in theory sounds amazing for us is actually torture for her and when she is feeling tortured, I am also tortured. SUCKY.
Being in the hospital for 8 days and having two of my really good friends not come by and see her or me...Sucks. Yes, I realize that they are men. I get that they are uncomfortable in the hospital settings but really...No visit...8 days? They only call and check in after they know she is home and ok. SUCKY.
Realizing that while you are in the hospital, you don't have a whole lot of friends anymore sucks. The thing is that I have been on this cri du chat/special needs road for almost eleven years and I have lost most of my friends along the way. Some to my own mistakes, some to my own emotions but most of the friendships were just casualties of the special needs world. It is a hard world to live in and a hard world to watch someone you love in. So people just break off. Why watch your friend in pain. Better to just leave I guess. SUCKY.
Having her back in diapers full time after 9 months, sucky. Worrying about her health every minutes of every day, sucky. Changing the dressing and retaping her tube every night, sucky. Feeding her until 11 at night and then getting back up at 5 am to do it again, sucky. Cleaning her hearing aides, sucky. Having to put her in the car still at almost 11 years old, sucky. Having 3 medical appointments and 3 therapy appointments every week and still trying to figure out how I am going to go back to work, sucky. Driving a mini van so that her wheelchair will fit, sucky. sucky. sucky. sucky.
There are lots of good things in my life but those are for another post. This post is just going to focus on the parts that are SUCKY...
To be agreeable and accepting of every opinion in every situation is one of my very worst faults. Causes havoc in my life constantly...most of the time, its my own fault. Sorry for being a jerk.
ReplyDeleteI read you blog every time I see it in my feed and it is inspiring to those of us that have less 'sucky' in our lives.
For what it's worth, you have a strength in you that I find exhilarating. For all the 'sucky' you have to deal with everyday, you handle it well. ☮
You do have so much on your plate right now, hang in there! You are doing your best and that is enough. Hailey is very lucky to have you as her mother. And yes we have to mold our lives around our special children and that can be very difficult but you are doing great. Stay strong!
ReplyDeleteI have those days too! I don't have as much to deal with as you do, but still there are days that you just want to ask why? Why does life have to be so sucky for our children and us? But, then you cry, and these kids will do something to just make you break out in laughter, and then you realize it is all worth it! Shannon isn't always perfect, and on those day's she has to deal with the sucky as much as I do! She gets aggrevated that she can't just go places when she wants like her siblings and sometimes I wish she could also! But, I try to accomodate her as much as I can, becuase when I'm having a bad day she accomodates me...she will come and give me the best hug...and no other hug is ever as good as her hugs when she knows I'm down, and it just makes me feel so good and realize I am the whimp, and she is the solid rock that helps me to stand, and continue on! She has a way of making you laugh when you are at your lowest point, and I know she is a blessing from God! But, those days where you want to just pull your hair out are sucky, but somehow someway we all get through them whether it be a special smile, or a knock knock joke, or just a hug! I know life isn't perfect, and don't expect her to be perfect either, but some days it would be nice to have a perfect world with ALL my kids being perfect and life in general being perfect! But, I guess that's achieved when we get to heaven! So, for now just know that we all feel for what you are going through, and we will all manage to find the strength to get through the tough times, and indulge in the good times when our children are having a really great day, and know that it is ok to have a sucky day...and hopefully tomorrow will be the greatest day ever! Love and prayer's Norma
ReplyDeleteAwww Thanks Mike. You have no idea how much that means to me. You weren't really a jerk. We are just two stone walls and we were banging our heads against each other :-)
ReplyDeleteThank you Charity I really appreciate it. I know that you can understand how some days we are up and some we are down. Honestly, this wasn't meant to be a drama causing post. I don't think that my life is sucky or that having her is sucky. I love her with all my heart and love my life too. I just think that the things that come with it are sucky sometimes...I'm sorry that was misunderstood. It seems like there is a lot of misunderstanding going on lately.
Thank you so much Norma!
ReplyDeleteYou are very welcom! Keep up the good work!
ReplyDeleteEverytime I read your blogs I am either laughing because I can relate to the funny side of it or crying as I know the sucky you are speaking of. I love and hate family gatherings they are so hard for Rebekah and I, as there are many kids and she wants to be with them, but boys don't want to play with her as she is a girl and she doesn't act like the other kids, little girls only stare at her....I don't know what makes me more angrier, the staring or the meanness! I basically have to chase her around because she either wants to empty the water cooler and make a puddle on the floor and play in it! Its exhausting! I too have to drive a crappy minivan so I can fit her wheelchair in it. I am her only friend and I think that breaks my heart the most! I feel guilty if I don't play babies, or with the playdough or color. Her father checked out of her life almost two years ago so really I don't ever get a break! Its always me me me...I am just exhausted mentally and almost everyday I feel like I am not doing enough for her to make her feel loved and happy! No one will ever understand our lives until they walk in our shoes. I am sorrh I didn't mean to rant here! My point is from your blogs and posts I think you are a wonderful mother who does the best she can! Which from my point of view is pretty darn amazing!
ReplyDeleteI think that sometimes just saying out loud how sucky it really can be is what we need to deal with the suckiness. It doesn't make it better, but it seems to relieve some of the pressure that builds when we hold it in and pretend that it doesn't suck. So shout it out! You absolutely deserve to let out the pressure of the suckiness. You and your entire family has been through so much extra suckiness lately. You are amazing and admitting to the suck of it all absolutely takes nothing away from your awesomeness.
ReplyDeleteI know just what you mean Nancie! Feel free to rant here any time! I too have to run around and chase Hailey at family functions. It is really exhausting! Thank you so much for understanding. We are all on the same roller coaster!
ReplyDeleteThank you Tommie. And I agree with you 100%. Even though this blog causes so much drama on my facebook page, it was worth it to get it out. I woke up feeling so much better this morning. Sometimes all I need to do is vent it!