Today is e 3rd of September. Here I sit on my bed next to Mathias at
6.03am. His breathing is loud n labored. It sounds cluttered with phlegm. His catheter is once again clogged. Would need to flush it once again later after giving a call to his nurses.
I feel very scared. I know that this is e toughest journey I have ever made so far. Not one I would have chosen for myself. But if this is what God has planned for me, I will walk through it n become a stronger person.
In 2004, 3rd of September, amazingly I was also losing someone who meant so much to me. I am surprised that it's happening around e same time. But looking back now, that cannot even compare with e loss now. I know that God will guide me through this just like e last time. I thought i wouldn't make it through then but I did. I became a much better person and one who knew my emotions n myself better. I am so much happier with my husband now then I would have had with that person. But of course i didn't know it then. It was a blessing in disguise. If not for what happened, I wouldn't have been strong enough to go through this experience with Mathias. I am blessed.
It's horrible having to watch my baby suffer like that n knowing that I am losing him. Yes, I do not like losing him. It's scaring me like hell. I do not know literally how i will cope without him with me anymore. After dedicating my entire life to him, e loss n despair will be horrendous. But I also know I need to let him go cause he has fought so long already n he has fought strongly n well for so long. I am proud of Mathias. He has been so brave n strong. I cannot keep him with me for my own selfish reasons. He can do so much more in heaven. Run, laugh, walk, giggle, talk. All that he can't do on earth, he will be able to do in heaven. He is suffering so much already and it's more then enough already.
I know that some people may not understand e rational behind my husband's n my decision with caring for Mathias at home instead of e hospital. I do not expect them to understand nor agree with our decision. We know that Mathias is happier being at home then e hospital and what we want for him now is for him to be as comfortable as possible. We will give him e same care that he will receive in a hospital. There's nothing more that they can do that cannot be done at home. Yes i can send him for test n probes, but even if we do find out e causes, r we going to put him through an operation when it would not be curing him of the main problem. Menkes is not curable.
I can put him on all sorts of machines to prolong his life, but would that really be for e best. Yes, i will prolong his life but at e expense of him suffering and that is not what I want for him. I just want for him to have great memories with us and to leave when it's time. It has been a precious 3 years. I would never trade anything for it. I love my son, illness n all. I do not regret having him nor giving him my all. I regret having no tool to cure him.
Life will be hard after he is gone but we have created so many beautiful memories together. I will always remember him n carry him in my heart. He will forever be my baby!