Before his FPIES diagnosis he had several hospital stays that were filled with needles, tubes, and countless tests. I never dreamed that this little bundle of joy would experience so much discomfort in his first year of life. We are so very thankful for the blessings that we can celebrate with him and that he is growing well despite what he has been through; but that doesn't take away some of this disappointments that come with his disease.
I have celebrated 4 first birthdays, all of them with so much excitement and of course that famous picture with little cake filled hands and icing mustaches. There is just something about seeing babies tear into that first confectionery delight, which seems to have become a type of passage into toddler-hood. I guess that's why I have so much sadness when I think about this special day. I am only human and I can't help but find my mind often dwelling on the things that my little guy can't do...one of which is EAT...so obviously that means no cake diving baby pictures for our little scrap book!
I know that my sweet boy won't miss it....but his mama will!
You right! It isn't the end of the world.... and yes I am very blessed to even have a little one to celebrate with, but just for a moment I need to be sad.... just for a moment I am going to let myself morn the loss of that image of a baby becoming a cake diving one year old.... just for a moment I am going to let myself be mad that my child doesn't live a "normal life".
I really haven't been able to bring myself to think about that special day in detail, in fact I can feel myself become anxious when I think about it. I am sure if my little man could talk he would tell me that the greatest gift I could give him right now would be to make him feel better. So for now, instead of planning a big day filled with festivities we are planning a hospital stay full of needles, tubes, tests and surgery.
I promise I won't let myself linger in this rut of sorrows or keep my focus on all of the negatives for to much longer. Perhaps as early as tomorrow I will once again see the silver linings that hoover around me.... but for right now in this single moment...
I promise I won't let myself linger in this rut of sorrows or keep my focus on all of the negatives for to much longer. Perhaps as early as tomorrow I will once again see the silver linings that hoover around me.... but for right now in this single moment...
I am sad
Mathew 11:28
"Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."
* Positive birthday post will come I promise...complete with our foodless cake idea!