The first three years of Brooke's life about drove this momma insane. They were spent researching (before the onset of the Internet); hours and hours were spent at the library looking up things. The word "undiagnosed" about did me in! I'd find some syndrome that sort-of matched Brooke and would call nurse Betty and say "Could this be it?" Her reply was always the same, "No, Gena." I struggled with not having any resources to turn to. There were no books I could check out that would help me with Brooke. There was no camp I could send her to. There were never any answers. I did what I thought would help me and co-founded a support group for parents of disabled children in 1991. Parent-2-Parent was just what I needed, but I learned after about two years, that it wasn't what others needed. We all grieved in different ways and while I was comfortable talking about mine and being "out there" with it, ohers wanted to be left alone or they wanted to grieve in private. It was with great sadness that I finally gave it up. I realized I couldn't force my group on people, nor could I continue with the expenses of mail-outs if only 2-3 people were going to attend.
Today, not a lot has changed with Brooke in regard to not being able to find resources to help. I've moved past the insanity of "not knowing" and can easily deal with that now, but the problems that Brooke now has in a lot of ways have put us right back to the "aloneness" of 20 years ago. The medical issues she has are not ones that are easily explained or even common in some cases. I was on Amazon last night buying a book on Healthy Alternatives and decided to look into Neutropenia. Pretty much the only books you can buy for this are Merck doctor's manuals for $200. So I tried books on blood clots or Warfarin...pretty much the same thing...there were books, but nothing that really seemed to "fit" Brooke. The problem is...nothing ever seems to fit. Brooke is a round peg trying to fit into a society of square holes. This is so hard as a mother when all you want to do is to do your best in regards to mothering her.
While our gem may be rarer and more different than others; we realize she the most brilliant and precious gem of all! I'm not going to sugar coat it...life with Brooke isn't easy. She didn't come with an instruction manual; this is a discussion the big guy upstairs and I will have one day. Ha! There are no books that fit, no camp centered around her needs, and sometimes...absolutely no one who can figure any of it out, including most doctors. At at the end of the day, she is just BROOKE. Our Brookie. One of God's most awesome (and perplexing)creations. And, for some reason, he chose Mike and I to be her parents. All we know to do is pray and ask Him for guidance and direction. God is the person in charge of her care; without Him...we couldn't do it.
Thank you God for Brooke! Please continue to give us strength, wisdom and the ability to care for her.
Gena you and Mike are Brooke's camp you both know how to make her happy and that is all that matters, you guys bought her a car, a car, just think about the blessing you are to her and to those of us that see all you do, go through, and overcome, that is a blessing and a light/example to all of us!!
ReplyDeleteMuch love, Cass
Hi Soul Sis! You are an amazing mommy! Don't stop doing what you do. You and Mike are blessings beyond measure to Brooke. And in turn Brooke, while opening your eyes to a whole new world, is a priceless gem! A blessing straight from God! How wonderful is that! I for one appreciated your support group. You just keep on enjoying your girl. I love you all ~ gina
ReplyDeleteShe is a blessing to us all! Will keep you guys in our prayers. Keep your eye on the prize, because we'll have eternity (which is a pretty long while :) when things are put right once and for all!
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