Ok, so I haven't been actively involved in the blogging world. Sigh. I apologize. I really have been feeling pretty overwhelmed with life lately. To be completely honest I haven't felt like doing anything related to therapy, doctor's appointments, and well having to deal with a child with Ds. I'm sick of it. I'm having a hard time keeping a positive attitude about things lately. It's like I feel if I don't think about it then it will go away. I know I have not completely come to grips with the whole Ds thing. I know I always sound cheery and positive on here most of the time, but honestly things have not gone at all as I thought they would. Here we are Lily is now 1 year old and it's like every time I turn around we find out some more bad news about her, as if having a congenital heart defect wasn't enough. I keep asking God, why me? Why am I the one that you chose to take on this HUGE endeavor? Then I say, "It's not fair!" All I wanted was to have one more child, one more normal child. This stinks! Sob, Sob. Part of me thinks maybe I should have never had kids. I was 39 when I had Gwyneth and 41 almost 42 when I had Liliana. Maybe I had no business having kids that late in life, knowing full and well the higher risks involved in having a baby with some kind of problems the older you are. Well, too late to turn the clock back now. What's done is done and as they say, "You made your bed so now you have to lay in it!"
I kind of look at this whole thing as a Love/Hate relationship. I love the fact that Liliana is so sweet and adorable and very good-natured, period. Now for the Hate part, I hate the fact that she is sooo floppy still that she can't even hold her head up. I hate the fact that she can't sit up so she is stuck sitting in a bouncy seat or laying on the floor all day. I absolutely despise the fact that we were told she would start drinking fantastically from the bottle after she had her heart surgery. Lie! No more drinking from a bottle for this girl. I hate the fact that I have to do mouth exercises with her every time before I can feed her baby food and then she can barely take 2 teaspoons on any given time. I have been told this is GREAT! Snicker. Great is if she were eating the whole entire jar! Let's see what else! Oh! I hate the fact that she has to be feed through a tube in her stomach that was obviously designed by a complete idiot! I hate the fact that she is near-sighted and will require glasses down the road, oh and did I mention she has nystagmus, wooohooo! What else? Oh the latest that I did not blog about that I found out about 2 weeks ago. She went in on June 9th for an ABR hearing test in which she had to be sedated (that's a whole other story), and the result of that...she has mild hearing loss in her right ear! Wow! all this great news is just killing me! I can't stand anymore bad news! I wish I could accept the fact that this is, what it is, and I will always have to go to lots of doctor's appointments and I will always be the one that has to look out for her. She will always need my support and help. That's huge! I don't know if I am capable of taking on all this responsibility. I feel like I have been trying to keep myself busy to keep from thinking about it and in the same respect I am exhausted. The past few weeks we had a garage sale at my in-laws and I am having another one here this weekend. Last week, we got up early everyday and participated in VBS at church. In between all of that I have been doing Weight Watchers, going to the pool, working out, going to therapy appointments with Lily, and just trying to keep up with things around the house. I can't wait for vacation! We leave on July 2nd and it can't get here fast enough! I wish I could just get past all these feelings I am having and feel ok about things but I can't. My whole world has been turned upside down since Liliana came along. I have always been a career-oriented person not a stay-at-home mom. I have always been part of the bringing home a paycheck and now I have nothing. I have to worry constantly about how we are going to make ends meet and if we will have enough money to put food on the table. It's a lot of pressure. I literally sit here daily and try to think of ways that I can bring money into this house so that we will not have to worry anymore. It makes me sick to my stomach thinking about it! It's soo difficult to completely put into words all the emotions I have been feeling lately. I think this is part of the reason I haven't felt like blogging. If you don't write about it you don't have to think about it. Well, I guess I needed to get some things off my chest even though it still feels like I am carrying around this HUGE weight that needs to be lifted. God help me to find something good in all of this and bring me back to a better place in my life. I need your help and guidance right now. Thank you for listening.
11 comments:
I don't know what to say. I really never had a problem with the fact that Jax was downs, or even his heart. But I also worked in a hospital with heart kids every day. But I do wonder why God has to pile everything else on us too. Is he trying to break us? I'm so glad you have a vacation coming up. That always helps, I felt so refreshed on vacation, and not a care in the world for those few days. Have a great time.
I wish that I could say something to make the hurt go away. It is not fun to always be cheery and happy, especially when you a parent of a special needs child who is alwyas doing therapy or dr visits. People tell me how I always seem so happy and the fact o f the matter is that I am not always...it is scary to think about WIlliam's future...will he live with me forever, will he have friends, will hebe able to get a job? It sucks at times BUT there are many happy times too. I could worry myself to death about the what ifs. I know that God does not want me to worry though b/c it literally gets us nowhere. In times of our biggest storms in life is when we draw closer to God, so know that he understands and he has it all planned out for us already. Feel free to contact me if you just want to talk. I hope that you are feeling better soon and more like blogging
It is okay to feel the way you are feeling. You have been through so much! I'm so glad you are going on a vacation - I hope you are able to rest a bit.
I am praying for you! I am praying for peace, strength and joy for each and every day ahead.
Oh Kim, I'm so sorry you're having to feel like this! I hope your vacation helps you to recharge your batteries. I'll be praying for you, too.
It's definitely ok to feel this way. I call them my "down syndrome sucks" days! haha I LOVE Kennedy exactly for who she is, but I definitely worry about her future and I get TIRED of pushing her to work harder to achieve goals that came so easily to the other kids... there are highs and there are lows, most definitely. When I'm in a low I usually just go hug on my girl and she reminds me of all that's right in my world. Hang in there. I hope you are back to blogging soon - the good and the not so good.
I don't really know what to say other than I think we all have our moments. You have had to deal with a lot in a short period of time and I think that would be frustrating for anyone. Don't let the age thing get to you like it is your fault for waiting. I was 29 when I had Lindsey so it just happens. Hope your vacation helps ease some of the stress. Enjoy!
Oh Kim. My heart absolutely goes out to you! I have those days too, most of us do. All I can do, all any of us can do, is let go and give it up to God.
God will never give you more than you can handle and he will carry this heavy burden for you. The load will get lighter, that's HIS promise to you. I will pray for you and little Lily.
I feel the same way a lot of the days! It is so hard to go to all the appts, therapies, etc. and act so cheery and happy, I hate it. I thought the first year was tough, but Ali didn't have any surgeries then, just tons of appts and therapy. Then the surgeries started, and I don't have to remind you about the stress and great accomidations at the Clinic! Now I just spend lots of time with Ali, and try to be happy for all that she HAS achieved - especialy after all the surgeries. Remember that Lily is still recovering from her surgery and learning how to get around. It will come when she is ready - Ali didn't sit up on her own until she was 2 and we missed it! As far as the eating, I don't think it is a reality for Ali and I hope Lili will make progress, even if it is slow. I just hope you never have to deal with all the med equiptment I have in my house - I feel like a mini hospital! To be honest I have not come to terms with the ds thing either! We need to get together after your vacation! Have fun, take lots of pictures, and maybe something will catch Lili's eye and she will pick up her head to look!
Kim,I soooooo understand this post.I hate it that my baby will be one year next month and physically she is only six months.It does get tiring and I hate wondering what she might have to go through next.Hugs to you!
Big Hugs, Kim. It's OK to think life's not fair and to be overwhelmed by everything. You can't always be a cheerleader for Down syndrome.
Kayla was at hippotherapy today and her therapist remarked how far she's come. I just rolled my eyes and said, "well, that's not far at all." Some days I get SO upset and depressed by Kayla's lack of progress, even compared to other kids with Down syndrome.
And then she does something amazing and those feelings go away for a while.
Wow, Kim, your daughter's laundry list looks very familiar... I wish we lived near one another so we could go out for a drink and rant. When I saw the pic of her in your sidebar with the little pink bunny slippers on, I thought, "hey, I have a pic of my daughter after OHS in those same slippers." Then I read this post and saw how much else our girls have in common. Some days it just sucks. I thank God we all have each other to vent to.
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