Saturday, November 8, 2008

Thinking Out Loud

We are blessed that the Hospice nurse that leads the "team" that Alyssa is on, lives locally and knows about having a child with disability first hand. She along with our EI nurse-she too is an experienced special needs parent-have been so helpful in planning preparing and understanding all of this. Very helpful. In the last two weeks I've spoken with 2 families from this area with daughters that have T18. The first being this area's S.O.F.T. organization's ( contact person. Her daughter is 22 years old! I literally cried when I heard that, as when I called her I had no idea if her child was living. The second family has a little girl that is nearly 6 years old.

In speaking with them,The thankfulness that I have Ed to rely on was stirred up again. In my conversations with Kathy from S.O.F.T. , she mentioned many dad's hit the high road when their child is born with a diagnosis such as this or they become detached and never "bond" with the child. I am very fortunate not to have experienced either situation. Ed is a good and loving father to all of our kids. In fact he is very kind and attentive to most kids. He's the dad that goes and plays and gets yelled at almost as much as kids for playing.

Alyssa's arrival posed a new challenge and he has stepped up. He is interested and attentive to Alyssa's needs. As needed he willingly comes to appointments. I say willingly because he could come and just sit there like a bump on the log but instead he is interactive and a good listener. To see him engage doctors, thoughtfully write out or think up questions on the fly tells me how invested he is in our daughter and her welfare. It is a real help to me and a comfort. Not that I would have expected otherwise but sometimes it's easy to take such things for granted; that he'd be here. He is wrapped around this little girls finger; hard to imagine cause Jessica has him wrapped pretty tight too! I am though thankful that he picks up the slack in addition to working. I am thankful for each day we have Alyssa in our lives and for the way generous support and normalcy of life has formed together well for us since her diagnosis. I recognize how fortunate we are and sincerely have tried to express appreciation for all this each day.

There are frustrations though that come along and when I share them please know that it is not my intent to complain rather I'm just trying to process things and figure out how best to handle all that is placed in front of us...I had asked a mom of another sick child how to manage my doctors appointments for Alyssa. Emotionally as well as practically. A key piece of advice was to remind doctors that our daughter deserves dignity and quality in her life for however long she is here. I often battle with myself to be my daughters mother, yes a mother who can advocate for her girl but a mother. As a former Advocate/Social worker it is very tempting to want to take on that role in Alyssa's life ~ you know present my daughter as a case vs. my child. She has though a wonderful nurse Case Manager and other capable professionals to help us deal with the medical pieces and balancing the doctors. Alyssa needs a mom she only has 1 of those. Like many pieces of this puzzle it's all a balancing act I can't be too sensitive by the observations of or the findings that the doctors have. I have to present our concerns for Alyssa with confidence and a willingness to be firm in what we know to be true while accepting that each step is a learning experience too. It's a step by step process.

We all have trials, disappointments, or illnesses to deal with in the mix of all the good things in life. So if for no other reason than to communicate hope in an otherwise sad situation I thank you God for all that is good in our lives. Every day it seems a question is posed about how to proceed in one area in her life or another. Wisdom to know what to do and when is constantly needed...Everyone, should be quick to listen,slow to speak, and slow to become angry. James 1:19

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