I have had a rough time lately. It's not related to a particular cause it's just because...I needed some time to be sad and stressed out. Hence the reason I said I needed some time to focus on myself rather than my blog. I thought I would sit down and write tonight about my true feelings, but I am at a loss as to where to start in the explanation. I feel like my life resembles a 5000 piece jig saw puzzle.... once I get it mastered I plan on framing my masterpiece.
Let's go down the line of the things that I have been struggling with because I have had many. I try to be a good person so I think that my blog might resemble someone that has an angel and a devil sitting on their shoulders. First, I am so very happy that I have a beautiful house to live in with my family. More thankful than I could ever put into words, yet I am resentful that I am the one that has worked so hard to keep us in this house. I am thankful that I have a little boy that smiles at me with every muscle in his little mouth, but I am resentful that other 3 year olds crawl into their mom's lap and say "Mommy I love you". I am resentful that people chase their toddlers around spanking them because they aren't "behaving". If Jude could throw crackers across a room I think I would fall down crying in thanks. I am resentful towards some mothers that have no clue what a gender sonogram gone wrong means. Yet on the other hand I am so thankful that my friends daughter that's pregnant will most likely have a very easy pregnancy and delivery. She is a very special girl and deserves the best pregnancy possible.
I resent people that say " well what did you do wrong" when they learned Jude had a stroke. For the very first time in my life I probably sound very hopefully lost, yet I for the first time really... feel. I am ANGRY this happened to my family, but accepting of it. The other night when I thought we may lose Jude ....life played out like a movie in front of my eyes. I could not imagine coming home at night from work and not hearing Jude call out in his own manner for "mom". I could not imagine him not being there wanting me to hold him. So the reality sunk in that someday either Jude or myself won't be there. It's humbling. It made me break....some thought it was Mike starting a job but it was the thought of losing my son that caused me to break. The day you heard your child has a possible lethal blood infection makes you question mortality.
I struggle with the fact that our life is not how we planned it. Trust me when I say that this isn't a pity party...because from age 7 my life has been altered. We all have our own stories. Yet everything that has happened in my life has been with reasoning. So I am trying to find a way to balance the life we wanted with the life we were given. Mike and I always wanted to travel, but we realized that's not really going to happen for awhile. One of the things that has sent me over the edge lately is thinking about traveling to my cousins much anticipated wedding with Jude. It's about 7 hours away from home. If we fly...how do we keep Jude upright? It might be an easy solution, but I have yet to find anyone that can explain any 5 point harness and it's neck control. If we drive Jude must be sedated due to the 7 hours drive...because he cannot even handle 1 hour. This also means IV feeds while we drive and having a suction machine on hand for his congestion. I don't mind, but it still becomes frustrating. Also trust me that we know HOW to travel with him, but it's exhausting. Not because Jude is a hassle, but because it shouldn't be this hard to travel with someone disabled....doesn't he deserve some simplicity? I really don't like leaving our house with Jude...because our house is our safe haven. Although like I said I so want to go....it's my baby cousin and I love her. I have been looking forward to this for a long time. I cannot WAIT to see how beautiful she is. I cannot wait to see her big day.
I am also struggling because I need more help than people can provide, at no fault of their own. I need help with Emily both emotionally and physically. I have such great support from people around me, I really do. It's hard to explain. I am very angry with people that I shouldn't be angry with. I told someone the other day "I feel so lucky because my amazing family helped me get a week a way". She said "What did you think about that week... be honest". I said "my children". She just smiled like she knew that would be my answer. She then said you have one amazing family, and without them you would be more lost....but it's a week Jenn...so it's understandable that you still feel a need to get away sometimes. You are lucky that you have such a great support system" I agreed with her because I am so lucky, without my family I would be lost. I sometimes still feel so stressed and I hope they understand that.
Throughout the challenges we have faced I am thankful for the support my family and friends have given me financially. I didn't want to ask for money so many of my amazing long time friends stepped up and bought Scentsy or hosted a party without me saying "please do this for me". Many people are now stepping up to help me create Regal Princess a pageant focused on facial beauty, inner beauty, and personality. Something that will help promote community service. Something that is very important to me. I love my job...I am thankful for my job but if "I ever leave this world alive" (flogging molly) I want to know I made a difference.
So it's a little weird in my life right now. I am questioning relationships I had with people that called themselves my friends. I am also finding ways to cut those off that didn't withstand the hard times without question. I am finding that things like a 20 yr reunion don't really mean much. I am admiring well...greatly admiring people that foster parent even tho I was a bit reserved at first regarding the subject. I found a best friend during this situation that I didn't expect to that makes me laugh everyday of my life (thankfully). I have had a couple of old friends step up and wrap their arms around me and I love them dearly for it. I have had family call me everyday just to say...hey. Without my family I would really be lost. I am realizing it's okay to have a complete and total meltdown when you know your child has a serious medical situation. I have realized that's it's okay...to not be okay.
Monday we see the Keto doctor and I believe that Jude will have more awareness. I want Jude to hold his head up...I want him to say my name, but I loved just holding him tonight. One thing I have is that Jude is always my baby and he loves it.
I thought this song that's listed on my site was fitting for today's blog.
"In times like these
In times like those
What will be will be
And so it goes
And it always goes on and on...
On and on it goes"
And there has always been laughing, crying, birth, and dying
Boys and girls with hearts that take and give and break
And heal and grow and recreate and raise and nurture
But then hurt from time to time like these
And times like those
And what will be will be
And so it goes
And there will always be stop and go and fast and slow
Action,Reaction, sticks and stones and broken bones
Those for peace and those for war
And god bless these ones, not those ones
But these ones made times like these
And times like those
What will be will be
And so it goes
And it always goes on and on...
On and on it goes
But somehow I know it won't be the same
Somehow I know it will never be the same. "
6 comments:
I have also found myself feeling the same way lately. I love my daughter very much, but life is just easier at home. I wish things could be easier for her in this world. When we travel, we have to load and unload her chair, which is difficult. I just do not have the funds to get a lift presently. We love the beach, but that too can be a challenge.I would give anything to see her run and play like the other children, not for me, but for her. The equipment we need is so expensive. I constantly worry about who would take care of Ashley if, God forbid, something happened to me. Our home is also our safe place. I only have very few family members who even try to understand our circumstances, or reach out to us in any way. Most people do not feel comfortable watching her for me because they are afraid she will have a seizure with them. The long and short of it is, as you said, people just don't get it. I have had many years of traumatic events with Ashley's medical issues, all of which were when she was smaller. I, too, realize we have alot to be thankful for. Most days I do OK, but lately I find I worry more about things out of my control. I just want Ashley to be happy and healthy. I also want people to see her for the sweet, intelligent child she really is instead of focusing on her "disabilities." My brother, who is a doctor, doesn't even try to talk to Ashley. My mother does not help me at all. My dad was wonderful with Ashley. He loved her very much and watched her for me every chance he could. Sadly, my dad passed away a few yars ago from cancer. Like you, I also work alot. I know how it feels to just be tired. Sorry this is so long, just know you are not alone.
There is no way I can possibly understand, but I can say, "You are in our prayers." God bless.
Big hugs and prayers.
I can't say I understand either, but I do pray for you and your family. I love you, girl.
Thank you for saying all those things that many of us with children with special needs want to say. I live in Southlake and would love to meet you jlieck@sbcglobal.net
I feel the same way. Although I am just starting my journey with Claire, I harbor so many worries about the future. Like you, I just wish things could be easier for her in this world. This was not the life I wanted for her, not the life I worked for, not the life I planned. It is so painful knowing that no matter what I do, I can't change her condition.
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