Well the last I wrote we were waiting for some scary test results for Makayla to find out if she had some progressive disorders. I realized that waiting to hear if your child's dying is something most parents will never have to endure. I have had to do this numerous times, will this time be the last? I really don't know, because officially AGAIN the Doctors have no idea why Mak is the way she is? Thats right, all results were negative!! Obviously this is great news however I found myself for the first time simply annoyed at the years that have gone by, the tests that have been done, the tears that have been shed, the googling that occurred, the STRESS that coursed through me, has all been for what seems like nothing!! Spinal taps, muscle and skin biopsies, numerous MRIs and EEGs, a butt load of blood work, urine samples, all done in tears and agony and all producing the same results of we don't know!! I know butt load seems like a very uneducated description but seriously the thought of all the damn needles just annoys me to the point of childish like tantrums and phrases like butt load!
The strangest moment I had in these final results is that for the first time in 5 years I officially allowed myself to acknowledge that this disability is forever. Don't for a second think that a disability only affects Makayla but it changes everything for everyone in our family. Great amounts of sacrifice have had to be made, and will continue to have to be made FOREVER! That's the word that got me so hard this time, FOREVER! I am going to be depressing for one moment and here it is: I may never have a conversation with Makayla, I may never walk hand and hand with her, I may never see her get married, I may never have an end to changing diapers (UGH), and I will never experience the empty nest syndrome!! I realize that all you cliche people want to pick up the phone and tell me that all things happen for a reason, and God doesn't give me more than I can handle, and blah blah blah, I KNOW but I am sad and a little scared of the life I have been given and the long hard road it will be!! YES I will make the best of it and yes Mak is totally blessed to have such an awesome mom!! ;) Its just that sometimes forever sounds really long!
I have many girlfriends who have special needs kids and they have had weird conversations about when their kids hit puberty and things like this, my participation in the conversation was putting my fingers in my ears and saying 'la la la' like a 3 year old. I wasn't even being funny, I was totally serious! I guess that's the denial they talk about in the grieving process! Denial......check!
So now that I've dealt with that I'll throw in some super optimism for ya! Makayla turned 5 years old on Monday!! She has come a very long way in the last year, particularly in the last 2 months. I had last blogged about all the supplements I had started her on and how I thought they were helping, well I am happy to report that she continues to make gains more than ever before! She is now on a gluten and casein free diet and boy what a difference!! She is happier, and way more engaged! She is also now saying 4 syllables, including saying 'bye'! The other day when the dietician was leaving, I almost fell over but instead I just jumped around and a had a little party all by myself! Ahh its the little things!!! I suppose that's the good part of every test being negative is that Makayla will not be defined by what others have achieved or not achieved but rather anything is possible!! I guess this is the beginning of acceptance!!
