Do you ever wonder how in the world can I make it through all of this? Well yesterday was one of those days… it was a very emotional day and this morning is just as emotional for some reason. I sit here at 6am wondering why I can’t sleep, why do things have to be so hard? How am I supposed to know what to do and how to do it?
So for those that don’t know… yesterday Zach drank a whole sippy cup of whole milk, so the whole day I dealt with a rash, fever, and a fussy Zach (his tummy hurt). It was because of my on Stupidity, so I have been taking it hard. Then I noticed that Zach’s heat intolerance has been getting even worse, walking from the car into church or into the house, is now causing him to be flushed, sweating and miserable. So my question is can it be winter already, please, my little one can’t do the heat and it is breaking my heart.
People don’t understand the heartache that I have had, I mean they say “he looks so good” or “he is doing so well” or “he looks normal”. In my heart I say yeah he looks normal cause we have been doing therapies (OT,PT, ST, FT) while some are new, we have been doing the PT since 3 months old. We have stayed on top of it and I have gone crazy trying to make sure that he has all the appointments and things that he needs to continue to do so well. I mean he looks so healthy cause he has a feeding tube that is on continuous feeds and although he isn’t gaining fast he is no longer losing and he is gaining albeit SSSLLLLLOOOOOWWWWWLLLLLYYYYYY. He is gaining and growing and he is thriving. He has medical needs but that doesn’t mean that he is depressed and worried about life, to him this is normal and he is thriving and smiling. To him all this is normal and he is happy with life and how God made him.
Sometimes I want to sit down and I want to ask people if they understand?
Do they get the finances? Do they get the medical bills? I mean do they understand that on top of all the things that we have like the house and car and all that there are bills for each ER visit and each surgery and each hospital stay. There are bills for the equipment that he has to have and so we have to get it. There is the money for each co-pay and for gas (driving at least 23 miles one way) and for parking. I hate having to decide if we can do this or that because we have been to so many doctors appointments there isn’t money for anything else. I hate telling Aden that we can’t go to the playground because Zach will overheat. I hate telling Aden that we can’t go to Monkey Joes (or fill in the blank) cause Zach is sick or the money just isn’t there this week.
Do they get that waiting sucks? I mean we are 6 weeks out on waiting for tests and we still have no idea, some people have waited over a year on these tests. Waiting is so hard, you don’t know when you will hear but you want to know if finally you will know the name of whatever it is that is causing your baby pain. You want to be able to tell people yes, he has ______? I want to know that I am doing all that I can do, I mean how do you know that you are doing all that you can if you don’t know what you are dealing with. We are always waiting… waiting to see if meds work, waiting for the doc to call, waiting for results, etc. Waiting sucks
Do they get that you are always doing something, let me rephrase, Worrying about something? First, I know that I shouldn’t worry; I know that God is in control, so I really try to no to but still sometimes, some days it is harder than others. I mean do they know that you have to be listening for a pump to go off, aware of the heat, aware of the ingredients of the food that they are near. Do they know what it is like to wonder if the person that has offered to keep your children means both of them or only your “healthy” one? I wonder/worry if I have done enough training or if I am going to get a phone call. Worrying that you are talking too much about your children? Worrying that you aren’t doing all that you can or all that you should be doing, worrying about the money to do things like therapy and equipment.