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  • Tarah OSullivan

Fresh Eyes

Drake started a new physical therapist (PT) last week. Our old PT we loved and had been with us since he was about 3 months old, but due to some health issues, she had to stop practicing and focus on taking care of herself. I was very nervous about starting a new person…..Drake is such a complex case. Also the dreaded evaluations…… answering all the questions that a typical “15 month old” should be doing, and then the hard truth of what Drake is able to do. I normally don't let the negativity stay long…. we have watched God bring him through so much, and there is too much to praise Him for to stay focused on the downside. We know Drake is delayed, but we have also watched the strength and determination to live, in his little body, that surpasses all understanding.

God really orchestrated this new PT…. We take Drake to a facility for therapy instead of having them come to us now. The first year Drake was so “fragile” and his good days were very few, that we felt it best to do therapy at home. Drake has really grown physically this past year, (praise Jesus) and the need for more equipment to help hold his body was a big deal. So with help from our dear friend, God placed this new therapist in our laps…. and she is phenomenal with Drake…. I mean PHENOMENAL……she SEES him…. really sees him… not the diagnosis…. not the “can nots” or “delays”. She sees an extraordinary little boy that is fighting so hard to adapt to his broken little body. She lays and talks with him, and holds him with such care. She is not scared of him…. (which honestly, Drake scares a lot of medical professionals because most have never heard of his diagnosis). She puts him in certain positions that cradles him, but challenges him to push past the comfortable… and OH how he tries….. just in the short two weeks we have seen him do more than in the last six months…. She SEES him like we SEE him…. and the more she encourages him, and picks up on all his little efforts, the more he pushes…I know it is probably so rewarding for him to finally be understood…. it is pure joy to watch them….and I get to be right there in the mix while she works with him. She teaches me different ways to really support him, and explains how and why his body is working the way it is.

For over a year, we have sat through what has felt like hundreds of doctor appointments and listened to all the negativity… we understand there is not a lot of “good” with an NKH diagnosis, and whatever “positive” we try to bring up, quickly gets snuffed out by a massive seizure that always seems to hit in one of our visits. And we don’t dare blame the doctors.. we have just learned to put on a thicker coat when we have to go to an appointment…. we appreciate them speaking openly, and we have to be strong enough to communicate back, so that we can discuss labs and chase the unknowns….. they are talking about a patient…. and we are discussing our son…..some days are a little harder than others, but God always finds a way to remind us that He is still in charge. Oh…and did I mention God was in charge….Drake is getting fitted soon for some braces to help support his feet as they develop… we want to make sure we do everything we can to set him up for WALKING one day….. did you hear that…..WALKING…goodness…we have always hoped for this, and we pray for continued strength, but to actually hear another professional talk about it is out of this world!!

He is a Good... Good Father...

I think our new therapist was sent in the exact time God ordained to give us that extra driving force of hope this year…. and to remind us that God will choose Drake’s path… God will say what he will and will not be able to do….. and God will reveal Drake’s milestones in His perfect timing….. We are just so thankful that He set up this weekly time of encouragement for Drake and for us…. He is a good father and oh how He aligns things so perfectly.

Thank you for your prayers…. thank you for your love. God is so faithful…. and we are so humbled to be on this journey…. thank you for caring about our son and loving our family….God really grew our “family” when we had Drake and we are very thankful for you all.

We love you.

- Eric, Tarah, littles, and Drake

Psalms 91:14-16

"Because he holds fast to me in love, I will deliver him; I will protect him, because he knows my name. When he calls to me, I will answer him; I will be with him in trouble; I will rescue him and honor him. With long life I will satisfy him and show him my salvation."


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