We have put our best efforts into making sure Donnie and David are healthy kids. I try to prepare as many whole foods as possible. The boys get plenty of exercise and exposure to intellectual stimulation. David has been on a rigorous program for about two years...
A little too rigorous. For everyone.
I became so compulsively focused on working on David's recovery program, I let it completely take over everything, to the detriment of our family. It has been three weeks since we have stopped the Institute's intensive program, and stopping has been overwhelming to me. Where to begin? Oh man...this may take several posts. I'll start by sharing a photo of a typical day for David:
That's right. About 200 things to check off. Outside of what is on the chart, there are basic needs for everyone to be met and preparation of reading materials. As much as I have put my trust in IAHP, taking time to rest and really look at what is happening has really made me think about a lot. It feels other-worldy after the manic pace we worked up to doing the intensive program.
I think we are experiencing the most normalcy to date as a family. By normal, I mean that the boys get to play outside. Donnie gets to go to swimming lessons and regular outings. David gets time to rest and explore. Mom gets to go to more places than just the grocery store at 10:00 at night and take a shower on a regular basis and eat and sleep and even read a book. This makes dad happy to come home to a wife that is not either utterly spent or writing homemade books at 2:00 am.
The past year has been a tremendous learning experience in so many ways. This post just scratches the surface. I have been absent from the blog for so long. I hope you continue reading about our journey now as we consider the health of our whole family.
For the first time in almost three years I feel like I can just...exist.
Shana,
ReplyDeleteI know that our situations are different with the girls however after about a year of staying away from everyone the DR wanted us to, I just said you know what NOPE we are not doing this anymore. We started going to the park, swimming, taking trips to see Grannie Pepper, and you know what did Brandi get sick yes she did, did she enjoy her time out and about yes she did. Before we started going she only knew the hospital, the nurses and the doctors, well then she got to know her family.
I know that the medical profession wants to take all precautions however sometimes we as momma's know what is best.
Brandi spent the first 2.5 years of her life in and out of the hospital more time in than out however when we were out, we were out and about. I am so thankful we did because we got some GREAT pictures of Ash and Bran with Grannie Pepper and Joel and I wouldn't trade that for anything. Finally after four years they finally found out what was really wrong with her she had a double aortic arch wrapped around her trachea which cause it to stay soft therefore she could not breat, well she could breath in but not out. So she had her trach for 2.5 years then a hole in her neck until she was 4 and thank the Lord for that hole because they acutally found out what was wrong with her, and that lead to open heart surgery. So life can be somewhat normal I think that normal is what we make it and kids they just need to be kids, and do the thing that kids do. I know that I am thankful for my twin girls that are now 16 years old and will be juniors next school year. I am thankful for Ash knew what her twin sister wanted and then would tell me.
So yes there is always a light at the end of the tunnel and sometimes it is just living life. I love you Shana and I know how hard this is, however those boys will bring you and Jeremy so much joy you just can't imagine. Give all the boys a hug from Aunt Bren and then tell them to give you a hug they way I see it ya'll could be hugging for at least 5 minutes hahhahah Love ya'll