A New Chapter

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Well, it has been a long time!  We’ve truly spent the summer “Savoring the Day(s),” as my sweet friend Sara encouraged us all to do a few years ago, in the midst of her battle with cancer.  I never, ever forget that advice and encouragement from her to all of us.  We spent our summer swimming as much as possible, taking Lindsay to therapy, going to the library, bouncing at jump places, and just enjoying a little bit of freedom! Now that Carter and Cason are back in school, we are getting used to a  “new normal” once again.

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I’ve been trying to mentally prepare myself for the fact that in a few days, my baby girl turns 3! I am a wee bit of a mess lately thinking about it and all that is about to change. I remember her birth day clearly.  I was so nervous on the way to the hospital, because I was worried about the boys and how everything would be different for their little world.  I was even sad about being away from them for the few nights that I would be in the hospital.  They had just started kindergarten, and it was very important for me to make sure they had what they needed, clothes were ironed, lunches were made, etc. I’m sure I drove Chip crazy with my lists and instructions!  Lindsay was born before the boys even started their school day that Thursday, and everything went well.  She did end up spending one day in the NICU due to some apnea issues, but, otherwise, everything seemed to be fine. I think back to that time often and marvel at all that we have dealt with since then.  Here we are, 3 years later, with a precious gift that has brought us more pure joy and more tears than I ever thought possible.

I’m in a bit of denial that things are changing so much, but I know that it is just another part of life.  A little over a week ago, we had Lindsay’s IEP meeting with the school system to go over the results of all of the assessments they performed on her several weeks ago. I prayed a lot about it,  and requested that many of you do the same.  I felt such peace during the meeting, even though all of the things they told me about her abilities were excruciating to hear.  I know what she can and cannot do at this point, but it is another heartbreak altogether when you have to listen to different therapists, the school psychologist, and special education teacher read their findings.  I just never imagined myself in this position.  Who does, really?

We agreed on the goals that were listed for Lindsay for this year, and I made my requests known that I would like for her to only go three days a week.  Fortunately, our insurance will at least help pay for some of physical therapy, so we want her to continue where she has been going the other two days of the week in addition to the therapy she will receive at school. Also, we just learned for sure today that she will still be able to continue with speech therapy, thanks to our wonderful physical therapist’s research and persistence!  Praise God!!!

We just got home from therapy a little bit ago, and I am having a hard time.  Since Lindsay will not be able to continue with occupational therapy except for at school due to our insurance, we had to say goodbye to our O.T., Mrs. Hilary, today.  I’m crying even as I type this!  While initially we were not excited at all about having to go to so many therapies for our girl, we have come to love these  ladies like they are part of our family. I don’t know if I can even adequately explain what these ladies do and what they mean to us, but I will give it a try. (And, I know that I will embarrass them to death, but surely they’ll forgive me!)

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Mrs. Carol is the first therapist we met early on when Lindsay’s neurologist suggested we get her physical therapy. At this point we still had no idea what was causing all of her delays, so Mrs. Carol instantly became such a great resource for us.  She has always been positive, proactive, resourceful, and just a great friend.  She has walked through so many things with numerous families over the years, and I don’t think much surprises her anymore.  She will stay up nights researching new ideas and resources for her families.  She goes above and beyond her “job description” to make sure she provides the absolute best care possible.  She has listened to me go through all of my stages of grief, and been there as I have occasionally “revisited” a few!  I feel certain that we have discussed every possible topic during our many hours together,  and will probably cover many more!

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I mentioned Mrs. Hilary earlier, but not enough!  She has been invaluable to us as Lindsay’s Occupational Therapist these last couple of years.  She definitely has a servant’s heart, and is one of the most compassionate people I know.  She too, has listened to me work through my feelings on more than one occasion, and she has always looked for creative ways to help Lindsay.  It is obvious that what she does is her calling; it is certainly not just a “job.”  She is always thinking, coming up with innovative ideas to try, and most importantly, always listening to whatever our concerns may be.  She is deeply spiritual, and that is evident in everything she does. (I’ve tried to talk her in to just working for our school system, but I think to no avail!)

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Mrs. Hilary and Mrs. Elizabeth
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Carter “helping” Mrs. Elizabeth. Not at all.

Mrs. Elizabeth has worked with Lindsay on speech and feeding, and thankfully, we are going to get to continue with her!  We found out just last week that this might be a possibility, and we are so excited that everything worked out for us to be able to do so!  We have so much in common, as Elizabeth also has twin boys and a little three year-old daughter.  We have probably laughed more than we should have, certainly have shared a few tears, and also figured out how to solve most world problems. 😉  One thing I love most about Elizabeth and will never forget is the way she responded the day after we learned just how severe Lindsay’s diagnosis is.  I handed her all of the information the geneticist had given us, and she just said,  “Do you know how many children have come in here that doctors said would never walk or talk?” She went on to tell me of some of the success stories she has seen and that doctors have to give the worst case scenario.  She never even batted an eyelash.  She probably doesn’t even remember any of that conversation, but I do. We have had some of the most hilarious conversations, and if you ever get ahold of either of our texts to each other-we’ll both deny they belong to us!

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Finally, Mrs. Liz is Lindsay’s developmental teacher, who has been coming to our house almost every Friday for nearly two years.  She looks at all of the goals set by Lindsay’s therapists, and she works with her on a variety of things each week.  She has become like an extra grandmother for Lindsay.  It is evident how much she loves Lindsay and how much she does for her that is not even required of her.  She has even been to work with Lindsay when ,technically, she was supposed to be on “vacation.” She has a granddaughter who has many special needs of her own, so she has been in our shoes when it comes to the uncertainty and fear that accompanies “scary” diagnoses. Mrs. Liz has always seen the best in Lindsay and believes in her continuing to exceed the expectations of doctors.  Everyone needs a Mrs. Liz!

“I thank my God every time I remember you.” (Philippians 1:3)

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So, as hard of a time as I am going to have with it, Lindsay will start preschool on Monday.  We move on from some of what has been a “safety net” for us to a completely new territory.  I know every parent experiences anxiousness and probably some sadness when each of their children goes to “school” for the first time, but this time just seems extra difficult.  While I am excited about her school and the teacher she will have, I am afraid of a lot of the unknowns.  When she is at therapy, I get to see what she is doing. I know if she is happy.  I have to learn to “let go” a little (or a lot) and trust that her teachers have her best interest in mind.  What concerns me the most is the fact that she cannot tell me if she has had a good day or not.  Will they know when she needs something  or learn all of her little “Lindsay-isms?” Can I go hide out and look in the window to see what she is doing? 😉

On the other hand, I will  get to have (a little) time to do some things I haven’t been able to do for awhile now.  My life has pretty much been devoted to her every need for three years now.  I will finally go back to the ladies’ bible class I used to attend on Fridays.  I may actually get my house cleaned, or I may not!  But, oh, how I will miss my favorite girl!  She is nothing but pure joy!  She has taught me so much about being happy no matter what.  Though she has many difficulties, some crazy sleep schedules, and needs more than most children, I love every little part of her.

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Aunt Jennelle and her favorite girl!
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They might need sleep, but I sure don’t!

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Saturday, we will have friends and family come to celebrate our girl’s birthday.  I will enjoy every minute of it, and I’m sure we will continue celebrating on Sunday, which is her actual birthday. On Monday, the new chapter begins.  I will begrudgingly put “Standard School Attire” on my girl instead of the smocked outfits and dresses I love so much!  She will ride to school with us as I drop the boys off, and then we will be on our way to Glendale.  I will try my hardest to make it back to the parking lot before I break down. I know this will be good for her-good for us, but that doesn’t make it any easier.  I am prayerful that she will thrive in her new environment, and that God will continue to show off as he grows her into the young lady He has known since long before she was born.

 

“I keep my eyes always on the Lord. With Him at my right hand, I will not be shaken.” (Psalm 16:8)

Until next time…

Laura