Wednesday, September 8, 2010

labor day weekend

Labor Day weekend was a nice break with the family after a rough week of emotional ups and downs. I am just trying to ride the waves a bit. One minute everything is going pretty well and I feel like I can take on just about anything and the next minute I feel pretty beat down by all the worry and details and lack of control. Prayer helps me to stop looking so far ahead and just take it by day or even hour to hour. Some of Sam's therapy sessions leave me feeling really excited, optimistic about all that Sam is accomplishing and then others make me feel completely blindsided by some little negative movement or lack of movement that I am not tuning into on my own. I have stopped comparing to the girls..he is his own little man right now. So quiet and sweet and although not really rigorously playing or moving about as I would like at this age..there is this sweetness and his eyes speak louder than anything. He is doing this cry that sounds like "ddddaaaaaady" and jason thinks I am silly to distinguish that word but his therapist hears it too. He is very social and engaging. He just doesn't quite have the dexterity to reach out as much in exploring and grabbing the way the girls did at his age. We will get there. Very rarely we get him to roll over but he looks at me like "what is the big deal mom?" and then I think maybe personality is playing a part in this. I have grown to hate the phrase, "They will do it when they are ready" even though it may happen that way. I love his new little laugh..he has accomplished much in the last couple weeks. I just need to be patient and try to stave off the worry and glory in the positive steps we are making.

It was a little bit hard this week to realize it would be impossible to help out in Bella's class like all the other moms. Bella asked me "Mom, when are you going to be there to help my teacher like all the other mommys?" Surely working moms are not able to be there but it hurt just the same. Afterall this is why I wanted to be a stay at home mom. This is the good stuff that makes it so much fun. I thought I could work it out on friday as that is a day sofie is in preschool and family would be mostly home and possibly available to watch Sam.. but once I started investigating this avenue I realized not even our own family is really wanting to take on the task of watching Sam for fear of all the medical what ifs..not that Jason and I are any more equipped for the what ifs but we are his parents and unless I can get connected with someone who is designed to provide medical day care..we are probably out of luck for those rare occasions. Of course one of my closest friends who is also an experienced nurse immediately offered to help with this.. but how can I ask anyone to do it just so I can go help with Bella's class.. in an emergency I could see asking.So I am doing what I can from home with cutting coloring etc class stuff. Why was this such a big thing to me? Would it have meant anything before I strapped on the guilt of feeling so divided and at times a bit low. It has just been a roller coaster over the last year between my mom, the crazy pregnancy and then Sam.. I just sometimes want off.. I want normalcy and maybe helping out in her little class somehow seems just that..normal.

I went to my mom's dr appt early in the week. I had a prayer the night before and really felt God pressing on me that this might be a downer for mom and I.. the other shoe dropping. It had been a while since I last attended one with her as all of this with Sam kinda left mom going on her own. After such an intense year with her last 7 huge surgeries and managing much of her recovery and the many many hospital is such a blessing that she got to a farely stable state right before Sam arrived. It was almost scarier for me though to not be going along with her to appts.. as I know mom is almost entirely deaf nowadays and with the one eye and horrible balance..I worry so much. What might she be missing at those appts..was her care falling through the cracks while I shifted my focus to Sam? Was it too taxing helping with the girls in the afternoons while I was gone those couple months? Was she taking care of herself? I hope that all this has not made things harder on her. It was not a great happy go lucky appt.. But she took it in stride and seems so strong in spirits. She is always encouraging and ever inspirational to me. She is always filled with beautiful joy and peace. God has gifted her that amidst the nightmare she has undergone.

 We talked the other day about how someone had stopped her and said that their son wanted to know what happened to her face..well mom had no problem explaining about the cancer and all the surgeries and radiation etc. I then channeled that story in my mind the other night when a girl who saw us with sam eating dinner asked me,"What's wrong with him?" in a less than compassionate tone. This is hardly the first time that phrase has come our way in I thought of mom and how she would have answered. Jason was of course waiting to see me break down and say "absolutely nothing..can't you see what a beautiful gift from God he is to our family! Please don't say that in front of his sisters!" but instead I explained as simply as I could that he had a rocky start on things and that the wires and tubes are there to help us make sure he is safe and able to grow stronger. I know I have been quilty of not thinking before speaking or saying the wrong thing so I know it is actually just an opportunity to let someone else grow from that moment. I have sure had my growing moments over the years and will surely have many in the future. So I pray to not be too sensitive. It only matters how perfect he is to us.

Well with that last paragraph typed I heard Sam's brady alarm go off and I took off for his room as I am supposed to record any and all events for the cardiologist on this event EKG recorder and have to hit the button fast. Well I thought I did everything right but then when I called it in the tech said it recorded the minute before his brady accurately but not the following 2 minutes. The leads must have gotten disrupted.. ugh. We had not had a brady in over 2 weeks and as insurance covers this test for one month.. so without sounding loony.. we actually wanted him to have an episode so we could record it and once and for all deem cardio out of the equation as the broken piece in our puzzle. His heart rate is hanging low right now and so I will probably stay up and make sure he rests easier. But not too easy... (I never thought I would find myself making light of these horrible experiences but I guess it is the evolution of our way of coping.) 

Right now I am praying for the recovery of two close friends, one just out of cardio surgery and the other battling cancer and pneumonia. May they find rest and recovery. I pray for the sister of my good girl friend who is trying to remain pregnant amidst a rocky end to her pregnancy. I am always praying for my sister in law who has recently been diagnosed with MS to find peace of mind and keep focused, not letting it bring her down. I pray traveling mercies for my sisters, one coming from Germany with her baby alone and my other sister coming from Tampa with 4 little ones alone. Both of their husbands are deployed. God bless them. Here are some highlights of labor day weekend in the pool and of the girls and Sam. Sam will be 6 months on 9.19.2010 and we are having him baptised that day. I am excited to plan a special day for him.
Silly Sofie

I am loving the water and my cool shades!
Dad and his gang of fish..


1 comment:

  1. Oh Amanda, what a big heart you have! I can so feel your pain and your constant faith. Your mom is an awesome person and I just adore her. How amazing is she?! You have her strength and she is so lucky to have you here. When Chad was so sick, not even the church nursery would keep him for me. I had to hire a nurse because I had to teach and was out of maternity leave since Whitney was also born with difficulties. We were even told in B'ham that Chad had Down's Syndrome. It is so hard since they can't talk to you. I would love to keep Sam for an hour or so if you ever need me to, so you can get some quality time with the girls. I know exactly what you are feeling! Super mom strikes again! You are only human and you are doing the very best you can. You won't realize until later in life, just how much your really ARE doing for your kids. Don't be hard on yourself and let people help you. Please don't hesitate to call me. Much love and many prayers ~ Donna