I looked at this girl on the computer screen and I saw her big smile and I saw her interacting with her family and walking and taking part in "normal" activities and I couldn't hold it in any longer! The dam broke loose!
Why is she able to do these things and Gavin probably never will be able to?!
I hate days like this! I hate when I let what life has given to me.....get to me! I hate when I feel sorry for myself! I hate when I look at the "bad" instead of the "good." But, every couple of months this is what happens. It all begins to be too much for me and I have to let it all out! Today is one of those days!
I am questioning so many things that have occurred in my life and I am focusing on all of the negative. I am wondering why I was given a child who had so much potential.....and then it was all taken away from him and I?! In my head I know that I am, and that I always have been, very blessed throughout my life.....but today, in my heart, I am hurting.
I am actually so happy to have been given a Down syndrome child! I even want another one! I feel that those born with DS have such a giving spirit and you can't help but feel loved by them and happy around them!
But, why did Gavin have to be born with such severe heart defects, spend so much time in the hospital, have so many surgeries, have to have a severe stroke, due to incompetence....which caused him to be legally blind and begin his ordeal with seizures....which causes him to be stuck at the age of an infant...for probably the rest of his life?! I don't want this life for him and I don't want it for me either!
I wish that Gavin could talk, walk, sit, eat, enjoy normal children's activities.....instead he can only lay there and he requires that every single one of his needs be met by someone else! It's not fair and today I am feeling it!
WHY???!!!
There is no one else on this earth that makes me as happy as Gavin does, but there is also no one else on this earth that can bring me to such saddness.....and today this stinks!
I hate that I am questioning God's plan for Gavin and my life, but occasionally I do and I hate days like this! I KNOW that God's plan is always better than my own and I know that tomorrow will be a better day, but today stinks and I had to get it out!
I wish that I knew what God's plan and reasoning is and was for Gavin and I.....but maybe I am blessed not to know the future for us?
I AM TRULY BLESSED.....I just can't see these blessings right now....my eyes are too clouded with tears.
I long for the day that I will be able to see my sweet boy walking and whole.....today this day cannot come soon enough for me!
Typing this out has helped bring some calm to me.....and the tears are subsiding. I will feel better soon, but today I'm feeling sad.
Gavin truly does make my life happier and better!
I'm just not feeling it today.
"Better to go to the house of mourning than to go to the house of feasting, for that is the end of all men; and the living will take it to heart. Sorrow is better than laughter, for a sad heart is made better. The heart of the wise is in the house of mourning, but the heart of fools is in the house of mirth." Ecclesiastes 7:2-4
15 comments:
I know...I know...
the pain you are feeling, all the uncertainties, the "why me's", the guilt for questioning this path, the pit in your stomach for your angel boy, the endless tears, THE BAD DAY...
I have had many...
I know the abyss you are in and feel today...
All I can say is...
turn to the one who can turn your tears to joy,feel him walking with you today and know he knows your fears and your hopes, and he has the master plan for Gavin and for you, and he will not fail you...
take it all to your father, that is what he wants us to do...lay it all at his feet, and then breathe...
you are in my prayers, and I think you and Gavin are amazing, wonderful people!!!!
love to you my friend...
i can't possibly say anything anything as eloquent and beautiful as Debbie did, I won't even try.
But can I tell you this post kicked me in the ass when i needed one!
And if the damn is going to break, let it break on us, that's what we're here for.
Hugs all to you today!
I cannot even possibly understand how you feel, but I do know that you are so very strong for not allowing the dam to break more often than it does!! Let the water from the dam rush over you and cleanse your soul...then when you are ready, stand up and make a splash - you have proven to do this so well! ((((HUGS)))) I love you!
Let it out, it's ok. Vent away, I'll always be here. I think this life you live requires you to have one of these days every now and then. If you didn't, you'd explode! Let that dam break. I do, and you have so much more on your plate.
As always, prayers, hugs, and love.
Oh I am sorry you are hurting today... You're in my heart.
What I love about you Alicia, is that you are so honest and open and are never,ever afraid to let it out.And you know what.It is truly the best thing to do.And after you have done it ... you circle right back to your faith and that is exactly what He wants us to do.
I do understand,so very much,what you are saying.Two times this week,found Mark and I in tears.And the tears came quickly and out of the blue.The first time Zoey was trying to pick up a book with of course her right hand and it was too heavy and she kept trying and trying and all the while that little "stroke arm" of hers just kept tightening up and contorting in this uncomfortable way and we just lost it and she ... she just smiled.The second time,Sesame Street was on and a little Down syndrome girl was at the doctors office,talking away and following directions like no other and well,we know the reality is, that that will never be Zoey.
But we weren't meant to have any other child BUT Zoey and we know that.God reminds us daily,
Tonight I send you love and prayers and remind you how very much we love your little man and thank you for sharing the joy as well as the heartache.
Okay,novel complete!
Alicia, I wish we lived closer to one another. Sending you love and prayers.
So many of us feel the same pains you are feeling. I'm not sure why these days happen. I sometimes think it is just that everything from daily "normal" life wells up inside and we just need a good crying and pity party to help move on to the next day.
There are times when I'm feeling this way that I ask myself would I really feel this way if I was truly excepting of loving her the way she is and yet I know I couldn't love her more because I cannot imagine my life without her.
Stay strong. Hold to your faith. And know you have friends and family who love you and are praying for you and Gavin.
Sending love from NH! xoxo
I know. I know. I know.
I wish we lived near each other; you have no idea how much I wish that. Sometimes I think you are one of the people in my life who can truly relate to our new experience ... with all the changes in Mallorie. Hannah (15) was crying - sobbing - yesterday, and saying that Mal was just perfect before. Perfect. And we want so much for her to just be HER again. You gave me hope by sharing about Gavin recognizing you again, and how long it took to get to that point, but it is hard to hold onto those bits of hope some days. While we were in the hospital (oh, we got home last Wed, so a little over a wk ago), I felt like it was my job to proclaim hope and optimism, because some days we were bombarded by hopeless comments and predictions. But that has been Mallorie's entire life, so that is not new ... but some days it's hard to say how I am "way more optomistic about this girl than you guys are, so it doesn't matter to me what you say; I know I have to be patient."
SO ... long and rambling way to just reach out and say I relate at a heart level this evening. This is the FIRST time in ages that I have had to actually check in on any blogs.
I really wish you could move to TX.
I know exactly how you feel. Since Hunter's seziures started in June of 2008 we have not had any progress in development, and the skills he did have prior to have been slowly decreasing. I become so jealous when I see other children with down syndrome that are thriving, and then I get mad at myself for being jealous. I love the fact that Hunter has down syndrome, but the seizures are such another story. I so feel for you and your family and pray for your strength.
I know I don't have any answers, or probably know the right thing to say, I can't say I know what you're feeling or going through because I haven't walked in your shoes. But I just wanted to say its ok to let the dam break and have days like that. It's ok to cry and be angry or sad and yell and question and vent. Allow yourself to do that, to have days like that. I think that helps us in moving forward. Hugs to you and sweet Gavin!
I'm sorry that this trial God has given is so difficult to bear. I'm praying that He will give you the strength you need and the assurance of His love so that you can continue on.
Hi Alicia....you have been leaving the kindest, most inspiring comments on my blog regarding my little Ella who is going through leukemia treatment right now and I realized that I haven't followed your blog before and so today, I finally come check yours out. I am so sorry that I caught you on such a rough day. But it is the life that you are living and you have every right to be honest with your feelings. I wish I could be as open as you are. I can tell just from the little bit I have read that you do have to work hard EVERY day. But then I see those great big smiles on Gavin's face and I see so much worth loving and working hard for. And as Heather said, this is exactly how God wants Gavin to be!! I know you wrote this post a few days ago so I am praying that by now you have found peace once again. He is just precious!!!
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