I wear my up and down moods pretty visibly lately and especially in my blog entries but I think being honest is about all I can control lately. I have to be honest or find myself buried by the act of putting on a perfectly happy face all the time. Not that we don't have light and happier moments, but we bounce from extremely thankful at being together with Sam doing well right now to feeling sadness and worry over what might be around the corner or at the bottom of everything. We deal with heightened moments over toddler issues made worse by them feeling our stress. But overall the girls have managed to come through most of this year unscathed and generally quite content. They periodically communicate seperation issues about hating how much Sam and I have been away this year, but realize we did come home each time and all was fine.
The main thing I struggle with is how to answer questions about how Sam is doing from people I run into during the day..there just is not a simple answer. So I usually say.. fine and that we are just waiting for answers from biopsy tests. They always remark on how good he looks because that has actually always been the case.. until he doesn't in those horrible moments. It is pointless to hash out for people the good and bad of the current status but for my own journaling here is where I guess we fall today in what I call the Good, the Bad and the Ugly..
The Good: Sam is very engaging as usual and does not seem ill right now although he continues to become taxed rather easily. He seems to be making progress though over the last couple weeks with his hand skills and neck control and trying to stabilize his body more. I feel like we are about where the girls were at 3 or 4 months in some ways but he is 8 months this week. He is taking some food and drink orally although it is an incredibly slow progress and he struggles and is left exhausted after the session. We don't know if his progress could be partly an impact of starting the P-5-P supplements 2 weeks ago. We are doing ok getting back into the swing of a somewhat normal routine with the girls and this weekend I got to have a little one on one time with each for an "outing" as they called it.. I took Bella to roast smores with some friends who were camping nearby for a few hours. I took Sofie to trek along the toy aisle tonight just to look and make her Christmas wish list for her grandparents and Santa. I did get some organizational stuff done with setting up Sam's medicine/supply cart in his room which felt good. We are hoping to soon secure a piece of tumbleform positioning equipment Sam needs for feedings and sitting. We used it in Atlanta and it helped Sam to feel more stablized and not have to focus on his neck control while eating or working with hands on fine motor skills. It was also great to help him safely ride in the wagon or larger strollers. Biggest ups for the week was the aid of my wondeful mom who is always optimistic and my inspiration.
The Bad this week: Sam had 3 bradys last night that kept us up worrying and running to his room each time. I have to say it is in the wee hours of the morning when I am sick with fear or worry that I get bitter about mental baggage. I absolutely should not blog at that hour as I usually just need to pray at the time and let my frustration give way to my faith and hope and letting go. In last night's case, I was holding in alot of frustration over a letter I received last week from someone who basically did not know or understand the depths of what we have been experiencing of late and made some careless statements and tried to make me pretty much feel like I was failing to meet the "perfect" expectations of wife, daughter, mother etc.. I see that it is easier for some to not try to really know your situation. Heck, I could never have imagined this turn of life myself and am not sure I would have wanted to entertain this possibility. God has blessed us with the right circle of support in our family, church and friends. I don't have energy for anything negative right now.
The other downer of the weekend was a realization that I really need to be able to work but we will be hard pressed trying to find a way to do it amidst still needing to ensure proper care for Sam if I had to leave the home part of the day. So I am now on a mission to make inquiries to a situation that could work for us. I am applying for a few positions which has me both excited at the prospect of something different to assign some focus and bathed in uncertainty over how I can make it happen as far as a nurse or nanny comfortable with his complexities. I am praying about it and doing my homework. Cost as always is the issue. The costs can not exceed benefits. The only other bad of late has been the waiting.. waiting .. and more waiting for those test results. Finding out the first piece of the puzzle from the spinal tap findings just made it worse as now we have even more questions.
As for the Ugly.. Even in the state we find ourselves in over Sam, our problems pale in comparison of those we are currently praying over for friends.When I think we are stressed about Sam but here he is breathing fine today and in his own crib tonight while others are on life support, I think I have so much to be thankful for... I hate that worries over finding a diagnosis, or financial worries due to medical expenses has made me blind to the fact that at least we are all together under one roof right now unlike other families tonight. I have several people on my heart constantly that are caring for critically ill loved ones or are seperated from their families. I fear I have not been able to do enough for them because I am a bit too deep in our own quick sand. I am going to make it my mission to change that mode in whatever small ways I can. I have always tried to do as a friend of mine puts it..pay it forward but I have never felt so stretched as I do now. We have been the recipients of huge levels of prayer and kindness and although I might not always have enough moments in the day to personally write thank yous to each individually, I know they must know we feel incredible appreciation. I just lately feel emotional overload and then when you come into contact with more sad news from other families experiencing a painful situation or when you just sit and listen to the news about the state our country is in or the loss of deployed military members..it seems just too much..too much to process. So for now I am trying to process and help mainly with my prayers.