Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Wednesday, March 14, 2012

I Wish.......

I Wish I could be dealing with a bratty 7 year old tantrum instead of dealing with screaming fits that last hours with unknown cause.

I wish I could be burdened by my daughters occasional restless nights sleep instead of administering 2 sleep meds every night and being pleasantly surprised at a full nights sleep.

I wish I could be talking to my daughter about a mean girl or the boy in her class that's teasing her rather than desperately trying to get her to tell me her basic needs through a computer.

I wish our trips to the ER were because my daughter was being a bit too fancy on the monkey bars and took a tumble rather than because of seizures.

I wish I could be meeting with my daughters teacher because her math skills need improvement rather than needing to home school her because the school system is unequipped to educate a child like mine.

I wish I could scold my daughter for saying a nasty word or for hitting her brother or sister rather than dreaming of the day when an actual word comes from her lips or a purposeful movement comes from her hands.

I wish I could hear my daughter complain about how much she hates what I made for dinner rather than having her obediently open her mouth while I spoon feed her.

I wish our nighttime routine involved a shower, reading time and then lights out (even if I find her later reading under the covers with a flashlight), rather than me having to bath my 7 year old, dress her, brush her teeth, read to her, administer meds and hook her up to her tube feeding.

I wish I could punish my child for crossing the street without looking both ways or running over to her friends house without letting me know instead of having to put my daughter in a wheelchair and pushing her across the street hoping we will find someone at the neighborhood park that would stop and say "hi" to her.

I wish I could be searching the Internet for a new recipe to make for dinner rather than searching for the latest research in Rett Syndrome.

I wish my oldest daughter could do her little sisters hair or pick out her clothes rather than the other way around.

I wish I could polish my daughters fingernails rather than searching her fingers and hands for callouses and skin breakdown because of all the hand wringing.

I wish we could be saving for a family trip or a new big flat screen TV rather than saving for the next needed medical device or an intensive therapy program.

I wish my husband could come home early from work because it's a beautiful day and we want to spend the evening as a family rather than coming home because it's only noon and I'm already in tears from a difficult day and he has to take over.

I wish a respiratory infection would bring the annoyance of a couple sleepless nights, steam showers, a pediatricians visit and a possible antibiotic rather than all of the above plus breathing treatments, dehydration, weight loss, labored breathing and possible hospital visit.

I wish there was a cure for Rett Syndrome.

I will continue to pray that all of these wishes come true but if they don't then I pray for increased strength for the difficult days, increased energy for the sleepless nights, increased resources to meet all of my daughters needs, increased peace to make it through the sicknesses and screaming fits and increased tolerance for the typical friends that complain about things I can only wish for.

3 comments:

  1. oh bridget! Im wishing right along with you. sending big big hugs.

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  2. Me to Bridget......our cure is coming, hang in there.

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  3. <3 brought me to tears. Its beautifully written and your wishes are ours too.

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