Nesting Part Two

Thank you for all your prayers as two of my boys have been up north!   John’s procedure was thankfully uneventful, the doctor accomplished his goals, and recovery is going well so far.  Praise God!  Not surprisingly, most of the tightness was in John’s hamstrings, so a good bit of muscle lengthening was done there.  John has open-toed casts that go up his legs stopping right above the calf muscles.  Meade said he is getting used to them, and they won’t prevent him from participating in any of his usual activities (except we are obviously modifying bathing techniques).   

On Friday morning, Meade and John headed into New York City for follow-up therapy with a wonderful lady another family in Atlanta had highly recommended.  She is an Anat Baniel practitioner and is the one who originally recommended the orthopedic surgeon in New Jersey.  It is refreshing to see people in both the medical field and the more “complimentary” mindset working together and believing in the necessity of each field’s work in the development of a kid like John. It certainly takes a village! The therapist was encouraged by how long and straight his legs are after the procedure.

In the last post, I mentioned two other big endeavors we have undertaken in this nesting season.  One was a trip to NYC in late June/early July.  Two weeks.  ALL FIVE of us.  We had no idea what to expect, but it actually turned out to be a wonderful family vacation full of adventures in addition to being a great time of therapy for John.  He saw the same practitioner he is seeing this weekend twice daily for ten of the days we were there.  After an initial snafu with our housing arrangements, God provided the perfect place for our family that even was attached to a grocery store down below.   Between getting our essentials there and ordering a lot of pizza, we were set!  And we had a lot of time to be tacky tourists (you can imagine the looks we received pushing two strollers with three kids down the street with this next baby clearly making his presence known as well).  Walks through Central Park, Museum of Natural History, Children’s Museum, boat ride to see the Statue of Liberty, a few fun meals out, catching up with some old friends, etc.  We really had a nice time, and it had been awhile since we have taken one of our combined vacation/medical trips.  Brought back a lot of memories from the many trips we took to Boston and Philadelphia in the early years.

We learned a lot from each therapy session, especially in involving John more in his daily routine than simply “doing” things to him, like mechanically plowing through feeding, bathing, or dressing him.  This is a significant change in approach to seemingly simple things like how we help him sit up or how we pick him up and transport him... things can become perfunctory.  We also worked on combining eye contact, verbalization (like asking him to say “ahhh” to indicated “yes”), and reaching out/touching to communicate what he wants. 

The other major undertaking was a trip to Plano, Texas for one night in late May.  We saw a brilliant and kind neurologist who specializes in cerebral palsy and actually has cerebral palsy herself!  Not only is she world-renown in this field (hence the trip), but it was also so refreshing to be with someone who gets it from the patient perspective as well… which leads to one of the main points of this trip: to gain a proper diagnosis one way or another for John as he had not had a comprehensive evaluation in over three years, is now in a very stable place medically at age 6.5, and most of his doctors were no longer believing John had primary mitochondrial disease.  Diagnoses aren’t always helpful, especially if therapies and interventions are going to be the same regardless, but they certainly can be beneficial when it comes to insurance, Medicaid, and qualifying for certain clinical trials.  So that was the goal… to see if John has pure CP due to his genetic mutation rather than a primary mitochondrial disease also being a factor.  Pure CP was found to be the case. 

This is significant in that we are hoping to enroll John in a trial next year (whether or not he is in the actual trial or in the “compassionate use” category) through Duke in which sibling stem cells from banked umbilical cord blood are given to the patient.  We have been hoping something like this might become available for over four years, as we banked both Daniel and Andrew’s cord blood at Duke’s blood bank with this end in mind.  We will also bank our next son’s.  (Side note: for those of you expecting a baby, if you decide not to save their cord blood for your own potential use, PLEASE consider donating it.  It is free and is a great source for research and treatment and does not involve embryonic stem cells.) Dr. Kurtzberg is at the very top of this field, and she has already completed many successful trials treating children with cancer.  This trial would not be a possibility for John if he still carried the primary mitochondrial diagnosis.  Of course, he has secondary issues as the mitochondria are certainly affected when movement and development are not typical. 

Additionally, “Dr. Jan” in Texas patiently talked to us about every detail of John’s care, from medications and supplements, to adaptive equipment, to feeding and drinking in more age appropriate ways, to communication devices, to wanting to check certain labs and do a bone age study, to needing a new baseline EEG, to bodily functions, to bracing and orthopedics, to his vision and hearing, to participating at school and in the community, etc.  She truly looked at the whole person and all of John’s needs.  This was a real gift as parents who typically have to piece together information running from one specialist to the next, without one overarching comprehensive assessment driving the plan of care.  We felt extremely blessed and came home with many good ideas we have been implementing since. 

So that is our nesting update in a nutshell.  The road can be long and certainly draining at times, but there are many gifts along the way as we see how God provides and orchestrates every detail.  Thank you for reading and for continuing to pray!  Meade and John return tomorrow, and we can’t wait to see them!  We can hardly believe we will be welcoming another son into our home in October!

Nesting

What does nesting look like in our house?  Well, it started early as the second semester energy kicked in and now is starting to taper off at 34 weeks.  Yes, we are putting together a new nursery (updating what was Daniel and then Andrew’s nursery and planning to move Andrew into Daniel’s room whenever we get up the courage!)… because who says you can’t have a little fun even if you are having another boy.  :)  And we all know that nurseries are for the moms anyways, so the new whale theme is giving me a lot of joy.  I am sure our newest addition will be thrilled as well.  Haha.

However, my nesting can be best summed up by my insane energetic attempts to tackle everything on my list for John before our deadline this new baby boy arrives.  And yes, I have an actual list of all ideas, present and future, that may be helpful to try where John is concerned.  I tuck away notes and ideas from doctors and therapists, but mainly from other moms in similar positions.  And then when I have spurts of energy and determination, I basically read over the list and pray God will guide me as to whether or not it is the right time to pursue any of these items.  I cannot say our decision process has always been like this nor is it always like this now… However, over time, I do feel we have been able to pursue the next steps for John with open hands, freedom and trust in God’s leading rather than tackling one thing after the next out of fear, striving, and anxiety. This makes a BIG difference.

Two key endeavors have been undertaken since May with another being implemented tomorrow.  I will skip to what is happening tomorrow so you can be praying!!  John and Meade are currently in New Jersey where John will be put to sleep tomorrow and undergo a procedure on his legs called Selective Percutaneous Myofascial Lengthening (SPML).  It is minimally invasive using punctures in the leg rather than any cutting, however he will be bruised for a bit and have casts below his knees for 3-4 weeks.  This will not limit him from participating in his therapies or school.  It was quite emotional sending them off yesterday, as this is the first big thing in John’s life I will not be physically present for, given that I am too far along to travel now.  But can I just say how incredibly grateful I am for my husband who is the BEST dad and I know has it all under control even without the control-freak by his side? :)

We have heard this procedure is pretty amazing, especially for the tightness that comes for so many children with cerebral palsy, so we are excited to see how the Lord uses it in John’s life.  The hope is that it will help relieve much of the tension caused by the hypertonicity targeting the groin area, hamstrings and heels and allow his therapies to be more effective.  An alcohol block is also used around the groin to determine how to best enable each leg to dissociate from the other, so they can have the ability to no longer just move as a unit but can move separately which is key to activities such as crawling and walking.  This should also improve his posture, in that the hamstrings are very connected to the buttocks and back muscles.  Many end up having a carry over effect, also releasing the muscles in their arms.  That would be awesome!

Thank you for praying for the procedure tomorrow (Tuesday, September 1st), for John’s recovery, and for the next steps that need to follow the procedure… for timing and guidance as it relates to our October 13^th due date!   So grateful for each one of you, our faithful friends on this journey!  I will try to post an update later this week along with additional information on our summer of nesting.

"Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen."
-Ephesians 3:20-21

Comments to Mothers of All Boys

Consider this your warning: this post will be different… this will be a venting post, but hopefully also an informative and ultimately encouraging one.  Below, you will find my thoughts on the rude and insensitive remarks people feel free to make to me when they realize I have this many children, that they are ALL boys, and that this baby growing inside of me is NOT a girl (I know most people don't really mean any offense, but I still feel the need to get this out there).

As anyone who has had a baby knows, pregnancy (or even adopting I hear) brings out the CRAZY in other people.  They feel they have permission (I'm not sure from whom) to ask or to say whatever they want about your body, about your unborn baby, about your family planning, etc.  The opinions people shared when I was pregnant with twins were also extremely absurd.  But that is another post...

Here are the two most popular comments I get and my staple answers I give in attempt to add some levity but also point out the truth that my children are blessings:  

1.  Stranger: You poor thing… you have your hands full! 

Me: Yes I do, in the best possible way!

2.  Stranger: You sure are outnumbered! 

Me: I love these boys, and what’s more, I get to be the Queen!

But add in another pregnancy and hormones or just months of these comments accumulating, and the result is one mama who is completely fed up with people feeling sorry for me or being so rude to doubt that I’m genuinely thrilled with my boys… like they really think I would trade one of them in?!

People ALWAYS assume we were trying for a girl (and this goes for every pregnancy since the first one), whatever that means, as if we have control over that.  They act shocked when I say we weren’t really going for either gender (maybe they need to go back to biology class), as if there is no way this could possibly be true.

At Whole Foods, the check out lady thought this baby in my tummy was going to be my third son (because John was at school—not with Daniel, Andrew, and me... Side bar: I’d really freak people out if they knew this was my FIFTH son).  She proceeded to tell me that my scenario is exactly why she didn't have a third child after her two sons, saying “I just knew I would end up with another boy.”  Umm, thank you for sharing that story?  I could have said that I didn’t feel that was a great reason to limit her family size, or that three kids isn’t all that many, but I left without giving any lectures (pushing my cart filled with paper bags, because I always forget my reusable, eco friendly ones in the car and feel judged every time I’m in that check out line, because you just try going back to your car with a cart full of groceries and two kids in tow… But I digress).

Then at a wedding, another guest told me her daughter was like me and had three boys…. but also had a girl.  Her exact words, accompanied with a sad look, were: “But she did get a girl.”  She apologized to me, because her daughter got lucky with a girl in the mix while I, on the other hand, apparently am to be pitied.  As if being pregnant with a presumably healthy child could possibly be a bad thing. These are all comments I get WHILE I am pregnant, standing right there in front of them, nodding and smiling because I feel like that is what I am expected to do.  (Typically, I truly find southern politeness to be the best and most respectful policy— that we are not people lying through our teeth. However, I might have to start making an exception in some of these cases.)

Someone today literally assumed I “just must be having a girl” when she saw me out with two of my boys at Chick-fil-a and noticed my big belly.  Normally, I try to nip these conversations in the bud before they can beat me to the punch with a question or comment by offering, “It’s a boy. Yes, all boys!”  But I guess she found her in as I was too late or not enough on my A-game to anticipate this conversation.  So after her expressed assumption I was having a girl, to which I laughed politely to ease the tension and informed her it was a boy, she was actually overcome with a downcast look and told me she was sorry. (Yes, another apology.)  She actually had the gall to apologize for my pregnancy, for this life growing inside of me, just because she perceives it to be the “wrong” gender and, that if it had been a girl, our family would no longer be lacking in some way.  She didn’t seem to care or even register my explanation (stronger, and not quite as polite this time): “No, I am blessed.  We love boys.”

Some will push on, “So you really weren’t hoping for a girl?”  Like something would be wrong with me if I wanted another boy.  Or that I was lying the first time she asked the question.  So then I have to go on the defense in the opposite direction to inform her that we were open to a girl of course, but we were also open to another boy.  That we didn’t have a goal when we were trying to get pregnant!  Really?!  It gets so personal.  Maybe I’ll start asking about their personal lives.

Some strangers come around with the consolation remark, “Well, yeah (sigh), I guess what matters is a healthy baby.”  And they don’t even realize that I really, really, really get that more than most (because most of the time I am NOT out in public with John, Daniel, and Andrew at the same time unless Meade is with us, and John is in school 9-3 every day, so they don’t realize I have a child with special needs).  And yet I also wouldn’t trade being the mom of the one who struggled before he passed or of the other who still struggles.  But of course, I wouldn’t wish pain and suffering on any child, so yes, we are always grateful for healthy babies.  Regardless, each child is a GIFT.  100% gift, all the time, no exceptions.

I couldn’t believe one of my perinatologists (high risk doctors) the other day told me that women “can really have kids at any age now,” because we can now find out about Down Syndrome and other chromosomal abnormalities as early as 10 weeks. i.e. “That can be taken care of with a little procedure, so no need to worry about increased risk or potential burden of carrying for a child with special needs if you choose to get pregnant at an advanced maternal age.”  What is wrong with our society?!  Who gets to decide who has worth, what qualifies one as having worth, and who deserves a chance in this life?

Many strangers will go on to ask about our future childbirth plans… again, it gets quite personal.  I’d say about 2/3 of people assume we must be finished because we already have more than our allotted 2.5 children or because, that after this many boys, we will finally throw in the towel and give up on must have been our quest to have a girl and that all these boys were just failed attempts along the way.   The other 1/3 will ask if we are going to try again after this baby for a girl (yes, they bring up trying for a girl… AGAIN…).  This is while I am pregnant… with THIS child… they are already skipping ahead to the NEXT hypothetical pregnancy.  They still don’t get it… we really are excited about THIS boy.  As my friend put it in her blog post today, which inspired my own, “If we decide to have another, we will again be trying for a baby.  These are human beings, not commodities.”  She with all girls and me with all boys… neither of our families are incomplete!  And yet that is the message we constantly get loud and clear.

I honestly get tired of having to be the bigger person, attempting to assume the best, letting the comments roll off, and offering the cute, witty response.  At this point, I feel I might explode if I am accosted by one more comment, which will undoubtedly happen as soon as I step foot outside my house again.  So I’m left with a few options… never go out again, until the baby comes (but that won’t work, because the comments get even crazier when you are out with all your children of the same gender in the flesh), OR get really snarky and start giving people a piece of my mind, OR get a hat or t-shirt made to wear whenever I go out (this is Meade’s suggestion) that says something like, “Yes, it is another boy, and we are HAPPY about it.” I think I’ll add this part too:  “Please keep any rude remarks to yourself!”

And to continue on this honesty rant, all of these comments and what they mean on a deeper level do hurt my feelings at times and do threaten to rob some of my joy over this pregnancy, over this life, over this precious addition to our family, MY SON.  He is WORTH being celebrated, too, regardless of his birth order or that he happens to be born into a family with all boys.  Sure, I’d be thrilled with a girl too, and like any other well-adjusted person, I am not anti either gender, and I do think about how fun it would be to have a daughter (mostly because I am so close to my own mom and hope it would be the same if I had a daughter).  Additionally, I can feel left out at times if I’m the only one in a group of moms who can’t relate to that part of parenting, and my mind can wander to the things I may potentially miss out on down the road if I never have a daughter. 

But I am positive of what I’m NOT missing out on by having these precious boys… children I adore who also adore me.  The best things that have ever happened to Meade and me.  Children who are made in God’s image.  Children who are in no way here by mistake.  God clearly has big plans for this band of brothers.  And even if we were “trying for a girl,” I trust HE knows better than I do as to what and who our family needs. 

I will continue my reign as Queen Bee.  If and when the day comes that we have a daughter, I will gladly share my throne with our little princess.  But if not, I will reign on and enjoy my family.  I am named after two British queens, am I not?  Okay, not really, but I thought it would be fun to throw that in there!  I will trade property damage and bodily bruises (mine which they inflict, not theirs) any day of the week for the love of these precious sons and the great privilege of getting to shape their minds and hearts as God graciously leads us.

Each and every child is a blessing.  And if you feel differently, then in the words of Miranda Lambert, please “Hide your crazy!”

Thanks for humoring me and reading this.

The End. 

My loves and me on Mother's Day

“I have come that they may have life, 

and have it to the full.”

-John 10:10