Infusion day

 Yesterday Lillian had her infusion in KY.  It went smoothly, except for the IV which seems to always be an issue.  We got a nurse we knew and I'm starting to recognize people, which is interesting because this is only the second time we've actually seen their entire faces.  No masks.   We are due to see her GI doctor in two months and make some decisions about her next scopes.  They were not joking when they told us her immune system would be compromised.  I can't remember her being sick so much since she was a little girl.  I don't like it.  She's even gotten to the point that she begs me to take her to the hospital.  Heart.break.ing.  I'm not sure, at this time, how much longer we will continue to have the infusions.  

Matt is doing well, still in cardiac rehab and still not yet working full time.  He struggles with fatigue.  Pretty normal I think.  

After our all day event in KY, we had another BIG even to attend that evening.  Our fourth daughter, Madeline, got married to her long time boyfriend in a small, private family ceremony on her now,  Grandparent-inlaws property.  It was short and sweet which is what they wanted.  Hard to believe I have another son-in-law, though we treated him like family anyway.  We enjoyed getting to meet his parents and grandparents.  I cannot believe I have three married kids.  Lillian was not happy to not be involved in the wedding, but she quickly got over it and enjoyed being there.  

Thank you for continued prayers as we "juggle" a lot of stuff in our lives.  

Here's a little snapshot of last night.

And so it goes

All the "normal" milestones she missed.  I remember being ecstatic when she could lift her pinky finger....or the first time she actually smiled.  I also remember crying because she didn't smile at me first.  My heart believed she didn't see me as her mom, but as her "nurse".   May sound crazy, but hey I'm just giving you the truth as it seemed back in the day.  

There is a friend from church that Lillian identified as "one of her people".  When she does this, we usually don't know why...we don't know the reasons.  So, Sondra has been one of her people for a many years.  She seeks her out to hug her on Sundays.  One Sunday, when Sondra was at the altar, Lillian insisted on going up beside her and knelt and prayed beside her.  This past Sunday, Lillian left our seat, when the preaching started, gathered her things and went to sit by Sondra. A few weeks ago, Sondra sat in the same row as us and Lillian immediately picked up her things and went to sit down beside her.  It was not lost on me, that my "teenager" got up to sit with someone else on Sunday morning.  My heart took joy in it. 

I so appreciate the love our friends pour out on Lillian.  I love that they accept her and continue to try to build relationship with her even though she can be shy, sometimes difficult, and a lot of times difficult to just plain understand her communication.  I appreciate that they don't avoid her. I appreciate that they continue to make efforts to communicate with her.  She doesn't have "typical" friends.  I adore when other kids speak to her (even when she often ignores them) 

So, all that to say, thanks for loving us.  Thanks for loving her.  Thank you for adding joy to my days. You will never know how much I appreciate it.